How to know if you are wasting your precious energy

How to know if you are wasting your precious energy

Do you feel like you’re wasting your precious energy? You’re living with a serious health issue or a loved one is so you have that to deal with. And life continues to happen, throwing curve balls your way. You’re trying to deal with it all and feeling pretty stressed out about it.

Stress can be exhausting. You have to manage your energy levels as it is and there isn’t a lot of spare energy. You may be wondering how you can make sure you’re not wasting your precious energy.

Picture of a person sitting down and catching the curve balls that life throws at them. They are holding three balls in one arm and on them is written, shit happens, stress and no time for you. They have another bigger ball in their other hand and on it is written bigger curve ball. Life is throwing them an even bigger curve ball and the person is saying, "I can't hold that! I don't have the energy!' The caption reads: How do you ensure you're not wasting your precious energy? If you're not sure, get in touch with Return to Wellness and we can help make sure you don't.

That’s a valid and important wondering. And I have a very handy model to share with you to help you make sure you’re not wasting your precious energy. I’ve been sharing it with carers lately and they have found it really useful. I reckon you will too.

How to make sure you’re not wasting your precious energy

#stress can be exhausting. When you live with a #health issue, managing your energy levels is really important. You don’t have spare to waste. Read here about how not to waste your precious energy #fatigue #spoonie #chronicillness Click To Tweet

When you are dealing with a situation that feels stressful, there are three things you need to consider about the situation to ensure you’re not wasting your precious energy.

  • What is in your direct control?
  • What are those things or people you can influence? You can’t directly control them, but you may be able to influence it in some way.
  • What is it about the situation that you cannot control or influence? You just cannot make any sort of change?

It’s all about what you can control and influence and what you can’t

When you have identified what you can control or influence, then you can plan what to do next.

For those items, situations or people you cannot control or influence, you may be concerned about it, and you have to find a way of not wasting your precious energy on it.

This is a picture of a model by Stephen Covey from his book The 7 Habits of Highly Effective People (1989). It has three cocentric circles. The middle circle says Direct Control and this is about focusing your energies on what is in your direct control. The next circle says Influence. This is about focusing your energies on what you can influence. The outer circle says Concern. These are situations, people and concepts we cannot control or influence. We may be concerned about it, but focusing our energies on these things won't get us anywhere. So we have to let go of them. The point of this model is to focus on what is in your direct control and influence and to let go of what you cannot. This will help you ensure you're not wasting your precious energy.

This model is from the work of Stephen Covey and he describes it in his book The 7 Habits of Highly Effective People. I highly recommend the book. It describes what are life skills that we all need.

This model encourages to focus on what you can control and influence and to let go of what you cannot. Covey talks about increasing your sphere of direct control and influence and minimising your sphere of concern. The sphere of concern are those things in your life you cannot change so you don’t want to expend your energy on them.

So how do you know what you can control and influence and what you can’t?

I’ll demonstrate this by giving you some examples.

Example 1 – Your financial wellbeing

Let’s start with the economy. The economy feels like some vast abstract concept but we know its importance to the financial wellbeing of our nation and even our own personal financial wellbeing. But we can’t control it. We may wonder if we can even influence it.

One way we can influence the economy is through our vote for public officials and politicians. We can vote for those whom we feel may make the best choices for our nation’s economy and our financial wellbeing.

The direct control we have is of our personal finances. So we cannot control the economy directly, but we can control creating a budget, choosing what to spend our money on, savings, investing, applying for benefits, etc.

Example 2 – The doctor with zero bedside manner

This is a scenario many of us will have dealt with. The doctor with a zero bedside manner who speaks to you as if you were a child and they, they are the great god of medicine.

Where you place yourself in relation to doctors can impact whether or not you are wasting your precious energy. There is a doctor standing on a pedestal saying, 'I am THE expert! Listen to me! Do as I say!' On the pedestal is written 'Great God of Medicine.' A woman is standing looking up at the doctor, frowning an thinking, 'Am I meant to bow? I don't like how this doctor speaks to me.'

You cannot control how the doctor will speak to you. That is in your sphere of concern. That may feel disappointing, but don’t go wasting your precious energy on trying to control a person. Because you can’t.

You can influence the doctor by how you speak to him/her. That is in your sphere of influence. What you say and how you say it may influence them, it may cause them to change their approach in communicating with you. But it also may not. Definitely have a go at influencing, just be aware that it isn’t a 100% guarantee to get you what you want.

What you can directly control is

  • what you tell the doctor
  • the tone of voice you choose to use, and, very importantly,
  • how you choose to respond to what the doctor says and how they say it

When interacting with doctors and #healthcare professionals, what you can directly control is what you tell them, the tone of voice you choose to use and, very importantly, how you choose to respond to what they say and how they… Click To Tweet

Here’s a hint regarding the doctor with zero bedside manner

Check your mental image and thoughts of such doctors. Do you see them on a pedestal, greater than you because of their education and profession? Do you have the expectation that they will sort you out and maybe even cure you? God-like?

Remember, they have to go to the toilet too. They are human, like you. They have mental health, like you.

So make that mental image of two equals meeting to resolve the same issue, which is getting the best for you and your health. Two equals who each have a different role and each bring a different set of skills to the table. Both roles are valid. And both sets of skills are necessary for getting the best for you and your health.

Example 3 – Controlling your health

It’s a frustrating, scary and a very real realisation that we cannot control 100% whether we got cancer, an auto-immune condition, a neurological illness or something else. We got it. We have to deal with it. The fact that we got it is in our area of concern from a control perspective.

This is a picture of a model by Stephen Covey from his book The 7 Habits of Highly Effective People (1989). It has three cocentric circles. The middle circle says Direct Control and this is about focusing your energies on what is in your direct control. The next circle says Influence. This is about focusing your energies on what you can influence. The outer circle says Concern. These are situations, people and concepts we cannot control or influence. We may be concerned about it, but focusing our energies on these things won't get us anywhere. So we have to let go of them. The point of this model is to focus on what is in your direct control and influence and to let go of what you cannot. In this picture there is also a line going from the centre of the middle circle to the outer circle. Where the line starts in the very middle circle it says 'you have control'. Where the line ends at the end of the circle of concern, it says 'you don't have control or influence'. You can think of this model as a scale. As you move further away from the centre of the circle of direct control, you have less control and influence. This will help you ensure you're not wasting your precious energy.

What we can do is influence our health through our lifestyle choices in what we eat, drink, exercise we take, and how we deal with the impact of the health issue.

Our choices and the responsibility we take for our choices are in our direct control. 

Your energy is precious

You or a loved one are probably in a place where you have to pace your energy due to physical and/or cognitive fatigue. As you pace your physical and mental energy, you have to pace your heart and soul energy too. You can’t keep wasting your heart and soul energy on people and things where it won’t make any difference. This model by Stephen Covey helps you to make sure you’re not wasting your precious energy.

The woman is standing and smiling saying, 'I now know what I can control and influence. I feel so much better!' There are three circles in front of her. One has concern written on it, another has influence written on it and the third has direct control written on it. In the circle of concern she has placed 'an even bigger curve ball' that life has thrown at her and a ball with 'shit happens' written on it. She learned that she cannot control or influence these two items so she is no longer focusing her energy on them. In the circle of influence, she has placed the ball 'bigger curve ball' in it. She knows she cannot directly control this situation, but she recognises how she can influence it. In the circle of direct control she has placed two balls. One says 'I can manage stress' and the other says 'time for me'. These are two things she learned she can directly control.

What’s it like for you?

In which areas do you spend a lot of your energy? In your sphere of concern, influence or direct control? Which situations do you find it easy to stand in your sphere of direct control? And which situations do you default to expending energy in your sphere of concern? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar). 

If you are living with a serious health issue or are caring for someone who is, and would like support to take control and positively influence that you typically find stressful, have a look at how we can work together and get in touch for a free no obligation consultation.

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© Copyright Barbara Babcock 2019

How to manage your health issue successfully

How to manage your health issue successfully

Learning how to manage your health issue successfully (or well enough) can sometimes feel like a full-time job. You have a lot to learn about your health issue, how people tend to be affected, what treatments there are, is there a cure, what non-medical treatments can possibly help, getting used to having a medical routine, managing your appointments, I can go on and on.

Yes, it is a lot to learn. And you have been forced to learn something you would not have freely chosen to. It can feel overwhelming at times. It can also feel like a hit or miss process. So feeling frustrated is normal.

Learning how to manage your health issue successfully is a trial and error process. I can’t change that fact but what I can do is share the 12 things you can do to help manage your health issue successfully.

This bog is part of the series on creating a rehabilitation plan for yourself or a loved one. In this blog, I am referring to managing the physical aspect of your health issue.

Picture of a man at a table with a box containing all his medications and a to do list he is writing. He is thinking, "I need more insulin and blood pressure medication. I want to see if I can bring the cardiologist appointment forward. My sugars are a bit high at the moment. Maybe seeing the diabetic nurse would help. So much to do!" It's not a small task to manage your health issue successfully.

So how do you manage your health issue successfully?

1. Keep a list of the medications you take, dosages and how often you have to take them.

You can also include any routines you need to follow for example self-catheterisation, bowel care, resting at regular intervals, etc.

It’s handy to have this list when you see medical and healthcare professionals as you can refer to it or give it to them when they ask what medications you are on. This helps when you may not always see the same person. You also don’t have to remember everything as you have the list to refer to so your energy is freed up to focus on what is going on in the appointment.

Also give a family member close to you a list in the event of an emergency. I have a list of my other half’s medications in my wallet.

2. Proactively track your symptoms

I recommend tracking your symptoms over time. It can help you learn patterns in how you are affected. For example, do your symptoms fluctuate during the day, when that tends to happen and what may trigger that (activity levels, diet, is it a side effect of medication, something else, or is it just random).

This requires you to listen to your body closely. I often find this is a skill people often have to learn. It’s understandable because as a society we are much more cognitive focused, i.e. we rely a lot more, sometimes 100%, on what we think rather than what we feel in our bodies. Yet our body is a very rich source of information on how we are doing and our needs.

Knowing the subtleties of how your symptoms feel in your body means you are in a better position to explain to medical and healthcare professionals when they ask you how things are going and how you are feeling.

Being able to explain how you are affected is also an issue I see for some people. It’s not easy as you are learning how your body is affected. But tracking your symptoms gives you the information you need to explain that to your healthcare professionals. Being able to do that is a key skill you need as it enables you to help your healthcare team to help you.

Picture of a man sitting at a table filling out his symptom diary. He is remembering how his angina symptoms feel and is thinking, "The angina starts when I run for the bus, argue with my wife and at the football. I feel a constriction and twinges where my heart is." The point of this is to manage your health issue successfully it helps to know your symptoms and how they affect you and track them so you can explain how you are affected to healthcare professionals.

3. Proactively manage your symptoms

By tracking your symptoms, you start to learn what you can do to proactively manage your symptoms. The strategies may include a change in medication dosage or the medications you take, non-medical activities, using equipment, or something else.

What you do will depend on the symptoms you experience. For example, pacing for fatigue and pain, stretching for spasticity, compression garments and massage for lymphodema, acupuncture, reflexology, etc. It may take some research and trial and error to find the non-medical approaches which suit you.

I think it’s important to not expect every intervention to work 100% and be that one thing that will solve the issue. It’s kind of like placing all your eggs in one basket and potentially setting yourself up for disappointment at a time when you need less of that. 

Many times you can’t be totally sure something will work whether it be a new cocktail of medications or different dosages or a non-medical intervention like health coaching. You have to go in with an open mind, give it a good go and see how it works for you. If it doesn’t work 100%, take what does work.

For example, I remember one person saying they had Cognitive Behavioural Therapy and it didn’t really work. I asked if any of it did work. They explained what did and I asked how much out of a 100% was it. They said 25%. I said to take that 25% and use it. Focusing on what does work is proactive and one way of taking control.

So this person did CBT and then tried health coaching to address the issue. They may have tried another activity too. You may find you need several different approaches to manage one symptom. That is often the case.

If a medical or non-medical intervention doesn’t work 100%, take what does work even if it’s only 25%. Focusing on what does work is proactive and one way of taking control. #seriousillness Click To Tweet

4. Identify what you need and who can help you meet that need

There may be other specialists who can help with your recovery and ongoing rehabilitation including physiotherapist, occupational therapist, dietician, specialist nurse, urologist, psychologist, acupuncturist, masseuse, reflexologist, counsellor, a health coach and more.

If you don’t know what kind of specialist would be best to help, identify the issue you are struggling with and start asking people what and who can help you improve that issue. The people you ask can be your GP (go see one who demonstrates empathy regarding your health issue), a nurse if you see one, support group and/or charity for people with the health issue you have, even friends if they are familiar with your issue.

5. Keep moving as much as you can

Our bodies are designed to move (think of all the joints we have in our body!) so a certain amount of exercise/movement is often good for us. How much and what you can do will of course depend on how your body is affected by your health issue.

You may require specialist input from your doctor, a nurse, physiotherapist, occupational therapist, rehabilitation specialist or a personal trainer. You may need to build up activity levels over time if you experience fatigue, pain and/or mobility issues for example.

Getting help from friends and family in doing your physiotherapy or taking some exercise is a way to get them involved when they ask how they can help.

6. Have a plan for medical emergencies

If there is a probability of you experiencing a medical emergency, note what that is, what needs to be done (do you need to take medications, have a procedure, something else), who needs to be notified and their contact information.

Make sure family, friends and colleagues know how to help you in such an emergency, even if your kids are young. In some cases, it can be the difference between life and death as in the case of a parent having a hypoglycemia episode due to diabetes. Also make sure they know what medications you’re on.

Picture of a woman on the floor with a glass of juice near her. She is getting up off the floor saying, "Thank you for bringing juice honey. You really helped mummy get out of a hypo. You did a great job. I am going to get up and we can sit on the sofa." Her daughter is standing nearby hugging her stuffed bear and saying, "You can hold my bear." To manage your health issue successfully you may need to teach your children how to help you especially in an emergency.

7. Develop a plan when you have an exacerbation of existing symptoms or relapse

If you are living with a fluctuating or relapsing condition, you experience periods when your symptoms are worse. Over time you may learn what triggers a fluctuation or relapse and what the symptoms start to feel like as you get worse (and better).

You also learn how to look after yourself to manage the impact, for example do you need more sleep during these times, minimise physical exertion, work from home, make adjustments to your diet, etc. Develop a plan for how you look after yourself during these periods.

8. Develop a plan for those times when your health is stable and in a good enough place

Likewise, when you are in a place where your condition is stable and you are in a good period, how do you look after yourself then? Sometimes we can be tempted to do a lot because we feel well, we don’t know how long that will be, and dammit we just want to live life and get as much done as we can! That’s understandable. If you do that, notice the impact it has on you and make any adjustments you feel are necessary.

When your #health issue is calm and you’re in a good place physically, how do you look after yourself then? Looking after ourselves is important whatever state our body is in – in sickness or in health and all stages in between.… Click To Tweet

9. You are in charge of your healthcare team

Your healthcare team consists of the medical and healthcare professionals, family, friends, pets, and anyone else you choose. You’re in charge of this team so it’s up to you to let them know what is important to you, what you need/want and your goals, and to ask questions. They cannot mind read nor guess what is best for you.

It’s ok to make changes to members of the team (where and when that is possible). You need good people around you who support you. For example, if you have an unempathetic GP, look into changing them.

My husband said one of his biggest learnings was that he was in charge of his team and he had to be proactive to get what he needed from them. And you are in charge of all aspects from helping them to help you to administration.

Also remember that your healthcare team won’t always get it right for you 100% of the time (medically though, you hope they do). They may have to cancel your appointment due to illness or deal with an emergency. They may forget to pass your new prescription on to the pharmacy. Their bedside manner may be hit or miss because they are having a bad day.

They are human too. As I said about not relying on one intervention to solve an issue, don’t go in expecting a medical professional to get it right all of the time and meet all of your emotional needs. Be prepared to make phone calls to sort out prescriptions and appointments. Have several other people in your healthcare team who can help meet emotional needs.

10. Prepare for your appointments with medical and healthcare professionals to get the most from them

This is another aspect of managing your health issue successfully. Keep a log of questions you have in between appointments. Write them down as they occur to you and what led you to have that question. That way you have the questions ready for appointments.

Prioritise your questions as you often have limited time for appointments. In the UK, you typically have 10 minutes with your GP (you can often book double appointments if you need more time). If you are seeing a consultant, you may have 10-30 minutes depending on the type of appointment and the professional you are seeing.

If you are in between appointments, or no appointments are scheduled, you can call your GP, your doctor’s secretary, or a nurse who works with the doctor. Sometimes patients are given the contact info for their doctor’s secretary or even a nurse. Sometimes not.

If you haven’t received a healthcare professional’s contact information, look up the doctor on the internet and sometimes they list a contact email or phone number for the doctor. If none is listed, you can call the hospital where the doctor works and ask to be put through to him/her or their secretary. You may be bounced around a bit, but it is worth a try.

There may also be a charity who supports people with the condition you have and they can be an excellent resource. Some have helplines you can call and/or email with your question.

Peer groups can be an excellent resource of information and advice too. Just keep in mind the information may not always be applicable to you or accurate.

11. Remember that learning to manage your health issue successfully is a process of trial and error

Don’t beat yourself up when something doesn’t go to plan or work very well. Sure you may feel frustrated. That’s understandable. Just don’t beat yourself up. Use appropriate self-care at these times to look after yourself.

Adopting a learning mindset will help in these situations. Focused on what you learned, what worked, what did not. Sit with the frustration for a bit so it gets its airing. But don’t unpack and live in it. Then re-plan. That is taking control.

Remember, learning how to manage your #health issue is a process of trial and error. It won’t go to plan all of the time. Don’t beat yourself up. Use appropriate self-care at these times to look after yourself. #chronicillness Click To Tweet

12. You have to be your own advocate to manage your health issue successfully

You have to know what you need and ask for it. If you are struggling to know what you need, you can get help to figure that out. Being shy about expressing your needs to the point you do nothing isn’t going to help.

Being your own advocate often requires a shift in your beliefs about yourself and your abilities. It’s about you learning that yes, you do matter. Very much.

You also have needs and they are valid needs.

Stating those needs to people whose job it is to help you meet them is not placing an imposition on them. If you don’t ask, you don’t get. So ask.

Sometimes you have to be more forceful in the language and tone of voice you use. As some people say, ‘I learned to be gobby and not care.’

Members of your healthcare team, particularly family and friends, can help you advocate for yourself. They can also be note takers at important appointments.

Essentially, you are the CEO of you. So you’re in charge.

Picture of an original quote by Return To Wellness saying: You are the CEO of you. So you're in charge. This is very much the case when you want to manage your health issue successfully.

What’s it like for you?

What has helped you manage your health issue successfully? Is there anything you would add to the list above? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).  

If you are living with a serious health issue or are caring for someone who is, and would like support to create your own rehabilitation plan, have a look at how we can work together and get in touch for a free no obligation consultation.

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Know of someone who would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2019

How to set strong goals for your rehabilitation plan

How to set strong goals for your rehabilitation plan

It’s important to set strong goals for your rehabilitation plan to help you in your ongoing recovery from a serious health issue. Strong goals are the foundation of your plan. They provide a destination to work towards and even the direction to take to that destination. They become your road map to the best recovery you can get for yourself.

But what does a strong goal look like? How do you know if you are setting yourself up to succeed? To help you set strong goals for your rehabilitation plan, this blog takes you through a six-step plan to do just that.

This blog is part of a series on rehabilitation planning and you can read the first blog here on the principles of a good rehabilitation plan and the second blog here on what you need to include in your plan.

This blog (and the first two) will help you whether you are looking to create a full-on rehabilitation plan or you are further on – months, a year or years even – but want to tweak something you are doing or try something new.

As I’ve said before, rehabilitation is a life-long activity. Sometimes you may not make great gains in your rehabilitation several years after the health issue arrived into your life. But your rehabilitation can keep you from regressing, which is important. Also, rehabilitation is about self-care. And self-care is for life.

So let’s go through this six-step plan.

A woman is holding a map with the title 'My Rehabilitation Plan' at the top and at the bottom is written 'My Destination.' There are four goals on the map and the map shows the route from each goal to the destination. The woman is thinking, 'This rehabilitation map is a good example to follow. Looks like there may be some challenges. I need to visualise my ideal destination and start setting some goals.' The caption read: Set strong goals for your rehabilitation plan can help you reach your destination.

How to set strong goals for your rehabilitation plan

1. Identify what’s important to you

What is most important to you in your life? Now and what you want to be doing in the foreseeable future? How far you look into the future is entirely up to you.

Is it your family, your physical and mental health, your work, enjoyment you get from your hobbies and leisure activities, financial wellbeing, feeling calm and at peace, having a coffee first thing in the morning before everyone else gets up, or having a life purpose? Do you want to return to studying? Change careers? Retire? Doing more things independently? Something else? Make a list.

It doesn’t matter whether these activities are small or big, bring in money or not, involve other people or not, are mundane, are behavioural or just an internal feeling. It may be something you have to do or want to do. They can be from many parts of your life as I wrote about in the second blog in this series of rehabilitation planning. What matters is that they are important to you.

I will use myself as an example with a real-life issue.

What is important to me is maintaining my ability to move as freely as I can, to maintain my physical fitness (so I have to be able to exercise), and to push off having a knee replacement for as long as possible.

This picture contains an original quote by Return to Wellness - "Now that you are living with the impact of a serious health issue - What is important to you?"

2. Have you been able to make whatever is important to you happen yet?

Are you able to do what is most important to you? Have you made it happen yet? If there is anything getting in the way of doing what is most important to you, add that to your list.

If there is nothing that is an obstacle to working towards your goal, and it is something you have started or can get started on, write down what is enabling you to do that. This could be something about yourself, a characteristic, strength, skills and/or a passion you have. It may be support from other people. It could be anything.

The importance of this is it reminds you of what is going well for you, your strengths, and what and who are around you that are a form of support.

An example

I live with progressive osteoarthritis in my knees. My right hip is in pain and I am worried it may be starting there. Moving as freely as I can is a bit hit and miss. By the end of the day when my legs are tired, my mobility isn’t great and I can end up waddling from side-to-side.

I feel down and sometimes frustrated about the pain in my hip. I feel I need to look at how I am thinking about this issue too. Not sure why, but feel I need to.

I have made exercise happen. Finally! (You can read that story here and here.) And I’ve maintained doing the exercise nearly every day and only took breaks over the Christmas holiday and when I had a light injury to my knee. Being part of a group of people who had the same goal to make exercise a daily part of their lives has helped. So has my self-discipline, which I’m really proud of.

I am seeing a physiotherapist for my knees and hips. The exercises have helped my mobility. I waddle less. But I still have pain.

IMPORTANT TANGENT: It’s important to recognise yourself for your accomplishments and pat yourself on the back when you’ve done something well, or something you are proud of. Because there may be times when others won’t do that and you don’t want to constantly be in a place of waiting for praise from others to feed your sense of self-worth.

3. Now it’s time to set some goals. But first, inspire yourself

Look at what is important to you and what is getting in the way of you doing/feeling what is important to you.  What is getting in the way can sign post you towards goals you can be setting.

The pain in my hip and from an old groin injury is getting in my way. This inhibits that feeling of moving as freely as I can.

Now ask yourself this question. If there was something you could do to work with whatever was getting in the way, to work around that obstacle or even work with the obstacle, what would it be?

I think the physiotherapist was a little perplexed I was still feeling pain given my mobility was better and she said the exercises helped to build the required muscle mass I needed. Need to get a scan to find out exactly what is going on in my hip.* I’m wondering about doing a meditation on my hip pain. Use the tennis ball more to massage my hip. I need to sit with my mental state around all this and figure that out.

Don’t judge your ideas now as good, do-able, bad, or not feasible. You’re aiming for as many ideas as possible. Write them down. It may be that the ideas spark another idea.

Do I need a walking stick for days when it’s really bad?

You could do this exercise with someone, in a group, or on your own. If you want, have someone read over your work as they may have ideas to contribute and thought of something you haven’t.

You can also share this with someone who has been in the same place as you but a bit further down the road. They can share what worked for them and others.

If there is anything getting in the way of doing what is important to you in your life, consider what that is and how might you work with or around it so it becomes less of an #obstacle These could become #goals in your… Click To Tweet

4. Craft your goals

Remember, goals don’t have to be of the Big Hairy Audacious Goal type. But they can be if that motivates you. If your goals are big, break them down into smaller goals. These smaller goals are like milestones you can work towards. You are more likely to achieve these smaller goals and this feeds your motivation to continue. Important.

For example, maybe you’ve had a health issue like Transverse Myelitis, Multiple Sclerosis, Cauda Equina Syndrome or a stroke which has greatly impacted your mobility. You want to be able to walk again preferably without a mobility aid within a year. That is your Big Hairy Audacious Goal.

Let’s break that BHAG down into smaller goals.

  • Your first goal may be to go on a course to develop your skills of using a wheelchair so you can get out and about and maintain some independence.
  • You then practice your new wheelchair skills.
  • Your next few goals may focus on strengthening the muscles needed to walk through physiotherapy.
  • Once you have the strength, then you try standing.
  • Then take a few steps with a zimmer frame, then walk 25 meters, 50, 100, etc.
  • You progress to walking with a stick.
  • You then try walking without a stick.

5. Whatever the size of your goals, make sure they are specific

This is key. Because when a goal is specific, it’s more tangible in that a specific goal gives you direction on what you can be doing. Specific-ness ensures your goals are strong.

Whatever the size of your #goals make sure they are specific. That makes it more tangible giving you direction on what need to do. Specific-ness ensures your goals are strong. #rehabilitation #planning Read more here Click To Tweet

Here are some examples of unspecific, vague goals that don’t give much direction on next steps.

Get out more

  • Get out more where? Doing what? With whom? When? Where?

Be more independent

  • Independent from whom, from what? What activities do you want to be doing independently?

Feel calm

  • What do you want to feel calm about? When do you want to feel calm? What gets in the way of you feeling calm? Is it intrusive thoughts? What other people say and do (or don’t)? Something else?

Do more things that make me happy

  • What things specifically do you want to be doing? With whom? When? Where?

Return to work

  • To the same job? If yes, do you need adjustments to your job so you can actually do it? If no, what kind of job do you want? When ideally? How will you know your body is ready? Or are finances dictating your return?

Using me as an example, an unspecific goal would be

Walk more freely.

Unspecific goals can feel large and they don’t provide direction on next steps. Whereas with the walking goal provided above, there was a clear progression of steps the person had set themselves to take towards their goal of walking again. They also knew they would need to attend a course and get outside help in the form of physiotherapy to help them meet their goal.

Answer these questions to ensure your goals are specific

This picture contain the 10 questions to help you set strong goals for your rehabilitation plan. The questions are - 1) What specifically do I want to be doing, thinking or feeling? How will that be different from what I am doing, thinking or feeling now? 2) How often do I want or need to do, think or feel this? All the time? Or only in certain situations? What situations are those? Where and when do they happen? 3) When would I like to make this change by? 4) Who will I be doing this activity with? Or is it one I do on my own? Or both? 5) Do I need to learn how to do something? 6) Do I need specialist expertise to help me? If so, what kind and who can provide it? (coaching, physiotherapy, acupuncture for example) 7) Who can support me as I make this change? 8) How can I hold myself accountable for making this change? 9) What other questions do I have about making the change I want for myself?

I’ll continue using myself as an example.

What specifically do I want to be doing, thinking or feeling? How will this be different from what I am doing, thinking or feeling now?

I want to be able to get up from a chair with minimal pain and hobbling. Hopefully there will be less pain. I will feel more free in my body because it is moving more as it is meant to. That feeling of freedom will be me getting up from a chair and walking a little more quickly and ideally no hobbling which I do now.

Notice how goals can be something you see someone do or say. These are behavioural goals. Or goals can be about changing how you feel or think and these may not always be readily visible to others (which is fine).

How often do I need or want to do, think or feel this? Is it something I will be doing all the time? Like walking and/or using a wheelchair for example. Or is it only in certain situations. If in certain situations, what are they? Where and when do they happen?

I get up from chairs and walk daily.

I exercise and do my physiotherapy daily. If I can’t, at a minimum 5-6 times a week.


When would I like to make this change by?

ASAP ideally! But I need a scan. And the results of that scan may determine what happens after that. If I could be walking more freely in six months time, that would be good. It feels like a realistic timeframe. I’ll book an appointment with the GP on Monday.*

Who will I be doing this activity with? Or is it one I do on my own? Or both?

I walk every day with people like my husband, friends or colleagues.

Do I need specialist expertise to help me do what I want to be doing? If yes, what kind and who can provide it? Or do I need to learn how to do something?

I need the following specialist expertise: GP to get the referral for a scan; orthopaedic doctor regarding the scan and its results, physiotherapist for ongoing physiotherapy.

Who else can support me as I make this change?

Husband for moral support. He can also give me feedback on how I am walking.

Coach and therapist for support on how I am thinking and feeling about changes in my mobility.

Notice how these forms of support are non-medical.

How can I hold myself accountable for making this change?

This is SUPER IMPORTANT. I see a lot of people rely on others for accountability and when the other person/people don’t provide it, the person never achieves their goals. You want to strike a balance between support from others in helping you to achieve your goals and support from within yourself.

I have just entered the task of making the appointment into my calendar. If it’s in there, it gets done.*

Including this issue in a blog is a form of group accountability for me.

When I get up in the morning, put on my exercise clothes and do my physiotherapy first thing. I can lay my exercise clothes out the night before.

Every day after finishing my exercise and physio, I will continue posting in the online boot camp’s Facebook group that I’ve done it.

When it comes to #accountability for achieving your #goals, it’s important to have a balance between support from others and support from within yourself. You can’t rely on support from others 100% for achieving your #goal… Click To Tweet

What other questions do I have about making the change I want for myself?

How will I know when a using walking stick would be a good idea? Ask the physiotherapist. And can the physiotherapist do anything to improve how I am affected by the groin injury?

By answering these questions, you give yourself much more direction on what you do next. You have defined a route so you know where to go.

6. You need large doses of willingness to adapt, be flexible, be persistent and practice self-compassion

Picture of a woman sitting at a table on which there are four large bottles of medication. They are adaptability, flexibility, persistence and compassion. The woman is saying, "Time to take my heart and soul medication." Large doses of adaptability, flexibility, persistence and self-compassion will help you when implementing your rehabilitation goals.

Some of your goals are going to require a lot of work on your part. You’ll sweat – physically and mentally. You may feel frustrated at times. You’ve got to stay with. People can support you and contribute to you feeling motivated, but at the end of the day, you’ve got to do this. Because no one can do it for you.

You may find that your end goal of walking without a stick isn’t achievable in a year. It may take longer than you thought. Or it may not be possible at all. You may have realised you were over-ambitious. (Being ambitious is not a bad thing. Sometimes ambition can get you further than you or others expected even if you don’t meet your original goal.)

In these moments, it is ok to be upset. And as I always say, you don’t have to unpack and live forever and ever in the upset-ness. This is when you need those doses of adaptability and flexibility, the persistence and self-compassion to adapt or even change your goal and continue striving towards it.

I get frustrated on some days with my hip and groin. It gets so painful and the pain can be random. I’ll have a good day and then several bad days. I walk more slowly sometimes. It’s frustrating. It’s ok to yell. And cry. (I do!) It’s a good discharge for me. I can then move on.

Remember, sometimes you may not know what the end goal is or can be

Sometimes you just don’t know what the end result will be. Or you may prefer not to set an end goal. You just want to get started and figure out the next step as you go along. That is ok.

In either case, what Martin Luther King Jr. said is applicable.

“Take the first step in faith. You don’t have to see the whole staircase, just take the first step,” having to see the whole staircase, just take the first step.”

Martin Luther King Jr.

Taking that first step with faith in yourself and the people supporting you is key. That first step is a goal in itself.

This picture contains the quote, "Take the first step in faith. You don't have to see the whole staircase, just take the first step." by Martin Luther King Jr.

What’s it like for you?

Do you like to make a detailed plan of your goals or do you prefer to take one step at a time? What other approaches to goal setting have you tried which worked for you? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).  

If you are living with a serious health issue or are caring for someone who is, and would like support to set strong goals for your rehabilitation plan, have a look at how we can work together and get in touch for a free no obligation consultation.

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Know of someone who would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2019

*UPDATE on the scan – Went to the GP to make the appointment, was able to get an appointment that day due to a cancellation, ended up having an x-ray on my hip yesterday. And so just waiting for the results. That was quick!

Here is what you need to focus on when creating a rehabilitation plan

Here is what you need to focus on when creating a rehabilitation plan

Creating a rehabilitation plan to manage your recovery from a serious illness, injury, relapse or exacerbation of symptoms is doing what you can to take control and positively influence your outcomes.

Sometimes on this journey you can feel at a loss on what to do and where to get information. As I said last week and previously, you don’t know what you don’t know when you get ill or injured. And when you don’t get much information from medical and healthcare professionals, that makes it harder to know what to do. Feeling a bit lost in this respect is entirely normal.

So I am going to share what I and others have learned about creating a rehabilitation plan. This builds on last week’s blog in which I wrote about the ten principles which underpin a good rehabilitation plan.

A woman is sitting inside looking dejected. Her wheelchair is in the corner and her walking sticks are lying on the floor. Outside the window it looks like a nice sunny day. Above the window is the caption, 'Life happening out here!' The woman is saying, 'I need to make my life happen again! Both in here and out there. I need a plan but where do I start?' Creating a rehabilitation plan can help you rebuild and renew your life.

But…

In writing this blog, I realised that to share my knowledge with you adequately, this needs to be several blogs. I had written over 6,000 words, the equivalent of a major assignment for a masters degree! That was too much for one blog.

Therefore, this week I am giving you an overview of what creating a rehabilitation plan entails. Successive blogs will focus on setting goals and then what you need to consider for each section of a rehabilitation plan.

These blogs may not be published one after another but when they are, I will refer back to previous blogs in this rehabilitation planning series. This blog is your starting point.

It doesn’t matter what stage you are at in your recovery/rehabilitation

Maybe you just received a diagnosis, are in the early stages of your recovery, or have been through treatment and no longer under the regular care of a medical or healthcare professional.

Maybe it has been more than a year since the acute phase of your illness or injury and you are still adjusting. Or even some years since the original event and you are dealing with the ongoing impact and whatever else life has thrown your way.

There is something in here for everyone. Even those of you in a caring/supporting role. You too are impacted by your loved one’s health issue and you have had to make changes as a result. Many of the ideas here will help you to create a plan for you to look after yourself and your needs.

A #rehabilitation plan is for you no matter where you are at on your journey – just diagnosed, during treatment, after treatment, several or many years after the acute phase #chronicillness #wellness Click To Tweet

Things to keep in mind whilst creating a rehabilitation plan

I’ve taken a holistic approach to creating a rehabilitation plan focusing on the medical, non-medical and various parts of your life.

Given your rehabilitation plan will be very specific to your needs and you are all on different journeys, some of what I mention may not be relevant to you. That’s ok. Use what is. Discard what isn’t.

Each section represents a transition in an aspect of your life you are going through due to the health issue you or a loved one is experiencing. They are meant as a starting point. And it doesn’t matter where you start. Start with those that feel a higher priority to you.

Get help from family, friends and suitably qualified professionals as and when you need to.

When thinking about a rehabilitation plan for yourself, keep in mind the ten principles I wrote about last week.

This picture shows the 10 principles to include when creating a rehabilitation plan. It's holistic. It focuses on what matters to you. It involves those close to you. It specifies any specialist expertise you need and who can provide that. It's goal oriented. It can be adapted. It contains info on what to do when you experience a setback, a relapse or fluctuation or progression of symptoms. It contains info on what to do in a medical emergency. It contains info on what to do when you are doing really well too. And it is for life. There is a little boy in the corner of the pic who is saying, "My mummy's plan is helping her play with me again.'

What to consider when creating a rehabilitation plan to progress your recovery

Set specific goals on what is important to you in the various aspects of your life. The goals can be large or small. Break down any large goals into smaller ones as that can make it easier to achieve.

The various aspects of your life, all which can feed into your rehabilitation plan, are listed here. Some of them overlap one another.

1. Managing your health issue

This is more about the medical side of things and your physical health: the medications you take, routines you have, learning how you are affected, managing symptoms, what you do in a medical emergency, when you are not doing great (but it’s not an emergency), when you are physically in a good place, and your healthcare team.

If you are in a caring/supporting role, this is is about managing your health.

2. Your physical environment and getting around

How you may need to adapt your home or move home, adapt your car and equipment you need so you can do daily activities or do them more easily.

3. Nutrition and making any needed changes to your diet

Sometimes your health issue may require you to make changes to your diet. Sometimes it doesn’t. But sometimes making changes can lessen symptoms and so may be advisable.

Regardless, what we eat and drink (and don’t) is fuel for our bodies and when you are recovering from a serious illness or injury or living with a chronic illness, you want to give your body what it needs and nourish it.

4. Prioritise your emotional health

This goes without saying. I tweeted the other week that experiencing a life-changing health issue (yourself or someone else’s) is that jarring wake-up call to life, that you’re mortal and not invincible. It also gives you that permission to make yourself a priority and look after yourself. This is so important. You cannot afford to not look after your mental health.

5. Nurture your relationships

You need good people around you. So this is about taking stock of who is around you, what relationships you need/want to let go of, what kind of relationships you want going forwards, and who isn’t a part of your journey but you want them to be.

Nurturing your relationships are part of creating a rehabilitation plan. A woman is sitting down with her walking sticks nearby and she is thoughtfully considering the following questions about her relationships. Who do I have around me whom I love? Which friends are part of my inner circle? Who isn't any longer? Who might be willing and able to help me? How can I help those close to me help me? What kind of relationships do I want going forwards? What relationships do I need or want to let go of? What isn't part of my life but I would like them to be?

6. Financials

This can be impacted when a health issue enters your life so this is about knowing what changes you need to make and where you can get support.

7. Return to work, volunteering and/or education

You may wish to return to your existing job, change jobs, even change careers. Or you may wish to volunteer instead or return to education. You may wish to retire and find ways to still contribute in some way.

8. Your leisure activities

Your leisure activities are really good for your mental health so this is about returning to previous activities, adapting how you approach them if you need to, and/or finding new activities.

9. Cultural factors to consider

Sometimes the culture we are raised in has specific attitudes towards health, illness and disability and this can have an impact on how we deal with our own or a loved one’s health issue, our relationships and how we get on in and with society.

Sometimes the culture we were raised in has specific attitudes towards #health #illness and #disability and this can have an impact on how we deal with our own or a loved one’s health issue and our relationships. I reckon this… Click To Tweet

10. Spirituality/ Faith

This applies if spirituality and/or a faith are important to you. A serious health issue can test your faith and you may argue with it, and/or even turn away from it for a while or forever. It can also lead you to incorporate spirituality and/or faith into your life more consciously.

11. Your life purpose

This is about who you are, want to be, what you consider important to you now and into the future, the kind of life you want to live and what kind of person you want to be known for.

Set goals on what is important to you when creating a rehabilitation plan. Your goals can be in the area of managing your health issue; your physical environment and getting around; your diet and nutrition; nurturing your relationships; prioritising your emotional health; finances; leisure activities; returning to work, volunteering or education; your life purpose; spirituality and/or faith; and any cultural factors you may need to consider.

There is actually a lot to consider when creating a rehabilitation plan

And only one part of it is medical. There is rather a lot that is non-medical but has a significant impact on you and your life.

It may feel like a lot to address. Don’t take it on all at once. Just focus on those areas that feel the highest priority to you and you think could make the most difference to you and how you are feeling.

And it’s ok if it takes a few years or more to get through all the sections. What is in a section may also change over time too. That is entirely normal.

Stay tuned for future blogs in this series on creating a rehabilitation plan.

When creating your #rehabilitation plan, you don’t need to do everything all at once. Just focus on those areas that you feel are the highest priority for you, they can make the most difference to you and how you are feeling.… Click To Tweet

What’s it like for you?

Which aspects mentioned above about creating a rehabilitation plan are most relevant to you right now? What if anything, do you feel is missing? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).

If you are living with a serious health issue or are caring for someone who is, and would like support to create your own rehabilitation plan, have a look at how we can work together and get in touch for a free no obligation consultation.

Pass it forward

Know of someone who would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2019

Here are the 10 principles of a good rehabilitation plan

Here are the 10 principles of a good rehabilitation plan

Having a rehabilitation plan for recovery and managing the illness or injury sometimes feels like an afterthought in the treatment and care of people with serious health issues.

Unfortunately, I often hear of people being discharged without any information other than medical information on managing their recovery and ongoing rehabilitation.

These people were lucky if the nurses gave them information from a charity or signposted them to a charity that could give them information and support.

You can feel lost at sea wondering what you can do, how you can help yourself. If you learn that someone in a similar position to you did get more info, advice and a plan, it can feel very unfair.

A woman is in a boat and there is a smallish sail that has 'medical sail' written on it. The woman is noticing that the wind is picking up but she is saying, "I wish I had a bigger sail. It will take forever to get home.' Two fish in the sea are talking to one another. One is saying, 'She needs a Return To Wellness sail.' This picture demonstrates that a rehabilitation plan needs to contain more than just medical information to help you in your recovery and rehabilitation.

As I’ve said many times before, as a patient you don’t know what you don’t know when you are diagnosed with a serious health issue or become seriously injured. It’s not like you have read up on the health issue beforehand. So in the early stages, you are very reliant on the medical and healthcare professionals. Learning they have the information but didn’t give it to you can feel like a betrayal of sorts.

I operate on the basis that ‘knowledge is power’ and we can certainly take control and influence our rehabilitation. If you wait for someone else to tell you what to do, you could be waiting for a very long time. Or if someone like a peer who also has your health issue tells you what you can or ‘should’ be doing, it may not be right for you.

So I want to share what I’ve learned about creating a rehabilitation plan as someone who has had a serious illness and having been in the caring role. As a precursor to this though, this blog focuses on the 10 principles which underpin a good rehabilitation plan. I’ll focus on the how to’s of creating your rehab plan next week.

Here are 10 principles of a good #rehabilitation plan. Read more here. #recovery #seriousillness #seriousinjury Click To Tweet

A rehabilitation plan is holistic

It focuses on the medical aspects of your issue and the non-medical too. In fact, the non-medical part of it can be pretty extensive. It may also include any social care needs you have such as benefits, obtaining necessary equipment and/or adaptations to your home.

It focuses on what matters to you

What is important to you, the daily activities which are the highest priority for you to return to, and what you want to be doing because it makes you happy.  

A good rehabilitation plan involves those close to you

The people close to you are your support network. AND YOUR SUPPORT NETWORK IS INCREDIBLY IMPORTANT. It can make a positive difference in your rehabilitation (Reblin & Uchino, 2008).

These people may be family members, relatives, friends, colleagues, others who have a similar illness or injury, and/or your pets. These people are your cheerleaders, they give you comfort when you feel down or are having a bad time of it, they help you with your physiotherapy, shopping, cooking dinner, cleaning your house, looking after your children, helping you if you have a health emergency or something else.

You can of course involve close family members in helping you create those aspects of your plan that may involve them, for example returning to favourite family activities. This gives them a role in supporting you, which can be great for them as they know how they can help you. And good for you to have that active support. A key thing is letting them support you. A rehabilitation plan does not have to be a solo effort.

A mother who now uses a stick to walk, her young son and husband are sitting at the dining table helping the mother create her rehabilitation plan. Her son says, "Mummy, running is exercise. We can play tag in the park!' His mummy responds, "Oh honey! I cannot run anymore. But maybe we can create a new tag game." The father is smiling and saying, 'Make sure to slot me in under me-time!' He is also thinking about how proud he is of his wife. This picture demonstrates that creating and implementing your or a loved one's rehabilitation plan does not need to be a solo effort.

It specifies what kind of specialist expertise you need and who can provide that

You may not know how to do some things in your plan so you may enlist the help of someone who does. You may need support with an issue that feels too big to handle on your own. A problem shared is a problem halved as they say. There may be an activity you need to do that requires a specific expertise you don’t have, like physiotherapy, osteopathy, or a coach for example.

A rehabilitation plan can specify what specialist expertise you need or want and who can provide that. But some people don't like needing help. This pic says, 'We have the saying in our society that 'a problem shared is a problem halved'. So why do we stigmatise getting help?

It is goal oriented

You may have a big goal broken down into smaller goals. Or it may be a series of smaller goals. Some of these goals may be key milestones, like being able to walk with good balance and not falling down for 500 meters.

Your rehabilitation plan can be adapted

As you implement your rehabilitation plan you may find that you need to adapt it as your recovery progresses (however slow or fast that is), stalls or you experience a setback.

As you are not a static person never changing, neither is your rehabilitation plan. Flexibility to adapt as you learn what works and as things change is key.

You are not a static person never changing, so neither is your #rehabilitation plan. Flexibility to adapt as you learn what works and as things change is key. #recovery #seriousillness #seriousinjury Click To Tweet

It contains a section on what you need to do when you experience a bad patch

This may be a setback in your recovery or you experience a fluctuation in symptoms or a relapse. This is kind of like a sub-plan of your main rehabilitation plan which you implement as and when you need to.

Your rehabilitation plan contains a section on what to do in an emergency

For example, if you have a spinal cord injury at T6 (T = thoracic level), you may be at risk for autonomic dysreflexia, which can be life threatening if not treated. Another example is hypoglycaemia if you have diabetes. So if you are at risk of having a health emergency and you may need the support of others to stabilise tings, you need to have in your plan what has to be done, medications to take, who to call, etc.

It contains a section on how you look after yourself when you are doing really well too

Just like you have a plan for when you are not doing well, you have a plan for when you are doing well. These might include favourite activities that you really enjoy doing and can do when symptoms are quiet or well controlled, or you are feeling physically and/or mentally well. For example, going to a concert or play, spending a day, afternoon or evening with friends, going on a walking weekend, entertaining, bubble bath, etc.

A good #rehabilitation plan will cover all the bases – when you are going through a bad period, what you need in an emergency and what you do when times are good #recovery #seriousillness #chronicillness Tell a friend

Your rehabilitation plan is for life

You may be thinking, ‘What the…???’

But yes, rehabilitation is an ongoing process. When you’ve experienced a life-changing illness or injury, often times your body has changed forever. It, and you, need tender loving care. And you need to provide that and make that a priority.

Sometimes you may not make noticeable gains in your recovery and you may have even experienced a plateau and wonder if there is any point in continuing. But keeping to your rehabilitation plan often means you don’t regress, i.e. you don’t lose functionality.

I have heard people say that they notice a change for the worse when they stop their physiotherapy, exercise or stretching for example. Or they stop an activity that has contributed to keeping their mental health in a good place.

In short, a rehabilitation plan is about developing new life habits that are about looking after all aspects of yourself.

Finally, share your plan with the medical and healthcare professionals responsible for your care. Particularly for those items which are medically related (medication dosages, etc.).

This picture shows the 10 principles of a rehabilitation plan. It's holistic. It focuses on what matters to you. It involves those close to you. It specifies any specialist expertise you need and who can provide that. It's goal oriented. It can be adapted. It contains info on what to do when you experience a setback, a relapse or fluctuation or progression of symptoms. It contains info on what to do in a medical emergency. It contains info on what to do when you are doing really well too. And it is for life. There is a little boy in the corner of the pic who is saying, "My mummy's plan is helping her play with me again.'

Come back next week when I focus on how you can create a rehabilitation plan.

What’s it like for you?

What principles above do you think are particularly important? And is there anything you would add to the list above what makes a good rehabilitation plan? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).  

If you are living with a serious health issue or are caring for someone who is, and would like support to design a personalised non-medical rehabilitation plan for you or a loved one, have a look at how we can work together and get in touch for a free no obligation consultation.

Pass it forward

Know of someone who would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2019

When is being defined by your disability a good thing?

When is being defined by your disability a good thing?

When is being defined by your disability a good thing? Is it a good thing to be defined by your disability? Or not? You may have a disability and think, ’Yes, I have a disability.’ But you may not consider yourself disabled.

I’ve been discussing these questions recently with people and have also come across them in the press.

They are not questions for which a straightforward answer is easy. Identity and disability are complex topics. You can write a book on it. So I will only scratch the surface in this blog.

What I do is share real life examples of how people view their disability. And from that the three things which can influence your thinking about being defined by your disability (or not).

When is being defined by your #disability a good thing? Is it ever a good thing? Tell a friend

‘I have a disability, but I don’t consider myself disabled.’

I heard this a month ago at a bladder and bowel support group I attend. The person who said it has a colostomy bag. (I have this person’s permission to mention what they said in this blog.) A colostomy bag collects a person’s poo because they are unable to pass it through the rest of their intestines and then out their rectum (for any number of reasons).

Looking at this person you would not know they have a colostomy bag. They go to work, see their friends, enjoy their hobbies, etc, etc. They are living their life. They just empty their waste through a bag, that’s all.

My other half also says he doesn’t consider himself to have a disability – he has diabetes and is insulin dependent. Looking at my husband, you wouldn’t know he has diabetes. He works full-time, enjoys his hobbies, etc. However, I know the changes he has had to make and they have not always been easy for him.

I often hear from people whose disabilities are not readily visible

Like having a colostomy bag or diabetes. Some of these people are able to continue their lives from an outsider’s perspective nearly the same as before the disability’s onset.

But also, if someone has depression or bi-polar disorder, they go to work, have a family, go out with their friends, smile and laugh, have hobbies. For people who experience depression, they may not experience it all of the time. Bi-polar can also fluctuate and at times the person may be going through a period where they don’t experience the depressive or manic phases.

In the above examples, the disability can be invisible or just not visually prominent at times and the person may not think of themselves as disabled. They are getting on with their lives and dealing ably with the impact of their disability.

I have a disability but I don’t consider myself disabled.’ – I’ve heard this a fair number of times from people with a #disability and write about it here. Tell a friend

But what about disabilities that are visible?

Society’s view of disability has traditionally been that a disability is visible, i.e. a person using a wheelchair or other aids for example. The disability has to be visible for a person to be considered disabled. (But that is an older view of disability which is changing.) So you would think a person can’t help being defined by their disability, right?

A picture of four people representing society point at a man using sticks to walk. The four people are saying, "You have a disability, you are disabled." The man is saying, "Uhm, I have a disability but I don't think of myself as disabled." The pic also contains the questions: When is being defined by your disability a good thing? And who is doing the defining?

You may become known as the person ‘in the wheelchair’ or who ‘has a blade’, or ‘uses a stick’ and/or a scooter. You yourself know that you are different from many of the people around you. That difference stands out and it is often the first thing people see and often react to.

Ellen Blunsdon, a student in Edinburgh, noticed people were looking at her more and she got more comments from the public when she started to use her walking stick routinely.

Maybe you don’t mind being defined by your disability in this way

I have heard people say, ‘My wheelchair is a part of me, it’s an extension of my body.’ In Ellen’s case, she loves her six walking sticks because she sees them as an extension of her body and something she can express her identity with.

I have also heard people say that their disability has played in a role in shaping the person they are today and has provided the opportunities to do things they enjoy in their life.

I remember meeting a guy who described the day he sustained a spinal cord injury (due to a car crash) as his birthday. He also said that he would not go back to his previous life.

Or the disability is seen as a bad and unfortunate thing to have happened but not the end of the world. For example, Kristina Vogel, the cyclist who sustained a spinal cord injury in 2018 in a cycling accident and is now wheelchair dependent said in this BBC article, “I still love my life. So nothing changed, really. Just how I move. I’m going to do a lot of things in my wheelchair. It’s different, but it’s still my life…”

Kristina Vogel’s gives a matter-of-fact description of her situation. I have heard many people who use wheelchairs say that all that has changed is how they get around and do some activities. Like Kristina, they now use wheels rather than their legs. For them, the rest of their life is similar to as it was before: they go to work, love, laugh, cook, have hobbies, etc.

They’ve adapted to regain their abilities to do the things they want in life. And they’ve found new ways to be able. So saying they are ‘disabled’ feels a misnomer. I feel they have ‘re-enabled’ themselves. They too are getting on with their lives and dealing ably with the impact of the changes to their body.

The pic shows three people with various disabilities and it's about them regaining abilities and regaining new ones after the onset of a disability. The man in the wheelchair is saying, "I've taken up painting as a hobby and I have my first exhibition." The woman who uses sticks is saying, "I still work as an engineer." A younger woman is saying, "I've managed to go to university even though I have chronic fatigue syndrome. I won't finish uni with my friends but I will finish."

Or you may mind being defined by your disability

You may wish people would see past your wheelchair, prosthetic, blindness, deafness, diabetes and see you for who you are as a person, your sense of humour, your skills, your achievements, likes and dislikes.

Or you worry about ‘coming out’ with your disability, concerned that people you have known for a very long time may treat you differently, as in the case of the student Ellen mentioned previously.

Or you mind being defined by your disability but you’re aware of the benefits and opportunities it has brought you

Billy Monger’s story demonstrates this point. He was rising up the ranks in the motor racing world when he lost his legs in an accident on the track in 2017. The racing world rallied around him to help and he ‘found himself transformed from just another driver on the rise, to a symbol of triumph over adversity’.

But ‘Billy wants to be known as a racing driver and “not the guy who drives with no legs”’.

‘“Before the accident, I was desperate to get my name out there. Now, everyone knows who I am, but in my head, it’s not for the right reasons,” he says.’

‘He’s conflicted because, in some ways, Billy knows he needs the spotlight now more than ever’ to move ahead in motor racing. His accident and consequent disability has given him the spotlight he needed.

Not only can you have the conflict of recognising the good things that happened and opportunities that have come your way due to your disability, but you also want to be recognised for yourself and your abilities regardless of the disability.

You can also have another conflict like Billy said in the article, and I’ve heard from others – In some circumstances they would go back to their old life if they could. You may feel the same.

This is what could be influencing your thinking about being defined by your disability

Writing the above, three things occurred to me which could potentially influence your thinking around being defined by your disability. And this is by no means an exhaustive list.

  1. What we as a society have associated with the meaning of ‘disability’ and ‘disabled’.
  2. There’s a theme in everything I have written of what other people think and how they respond to disability.
  3. Feeling that one is ‘disabled’ is a very subjective experience. And so it will differ from individual to individual.

I could go into what the law considers to be a disability as per the Equality Act but to keep this blog from getting even longer, I have chosen not to address that. Suffice it to say that if your impairment is considered a disability under the Equality Act, you have an extra layer of protection in the workplace. This is when it may be open about your disability. For guidance on the Equality Act, this is also a useful document.

A man who uses sticks to walk is sitting on an ottoman holding a book titled 'About Disability' and thinking the following: I'm ok with the term disability. I do have a disability, but I still have many capabilities. So I'm not sure I'm disabled. But other people think I'm disabled. It's frustrating when they think I've lost all my abilities. What do we mean by being disabled?" The caption has the question: How do you think about being defined by your disability?

What we as a society have associated with the meaning of ‘disability’ and ‘disabled’

When you look at the word ‘disabled’, there are two parts ‘dis-abled’. And it’s the meaning of the prefix ‘dis’ which sets the tone for the meaning of the word ‘disabled’.

According to the Oxford dictionary, the prefix ‘dis’ can give a word

  • the opposite meaning, e.g. like and dislike
  • express negation, e.g. disadvantage
  • denote reversal or absence of an action or state, e.g. disaffirm
  • denote removal of something, e.g. disbar
  • express completeness or intensification of an unpleasant or unattractive action, e.g. disgruntled

Dictionary.com also defines ‘dis’ as having a ‘privative, negative or reversing force’.

I had to look up ‘privative’ and according to the Oxford Dictionary, it means ‘marked by the absence or loss of some quality or attribute that is normally present’. Dictionary.com refers to privative as ‘causing, or tending to cause, deprivation; consisting in or characterised by the taking away, loss, or lack of something; indicating negation or absence’.

A disability in the context of our bodies means that we don’t have (from birth) or lost some functionality whether that is physical and/or mental.

There are two parts to the word ‘disabled’ – 'dis' and 'abled'. The prefix ‘dis’ means loss, deprivation, negation, absence. No wonder people say, ‘I have a #disability but don’t consider myself #disabled.’ Who wants such… Tell a friend

But given the meaning of ‘dis’ has negative connotations, a sense of negativity has been associated with disability

That it’s negative to lose functionality. It may very well be, don’t get me wrong. In general, we don’t like losing stuff. But also, when we lose functionality, we are then different from the majority of people around us. And society doesn’t always deal well with difference.

This negativity is often inherent in the everyday language people use to describe disability. For examples of this, read the article about Ellen where there are assumptions that disability is associated with not looking pretty or older age. There is also the issue that if you have a physical disability, people will assume you can’t speak for yourself or are also impacted mentally.

Most people don’t want something negative associated with themselves and their abilities. So it’s understandable that someone who has a disability may not consider themselves disabled.

People often don’t want negativity associated with their disability. Take Billy Monger mentioned above. He wants to be known for his skills first, not his disability. First and foremost, he is a human being with a career path, hopes, dreams, likes, dislikes, etc. He just happens to move around differently.

So I come back to the point I made earlier about ‘disabled’ not being quite right when people have adapted how they approach every-day activities and found new ways of being able.

What other people think and how they respond to disability

As in Ellen’s story, sometimes Joe and Jane Public can do an excellent job of sometimes inadvertently, but also overtly, disabling the person with the disability. This often happens by what they do and say, and the assumptions which underpin what they say.

For example, being told you’re inspirational for doing something normal like going shopping in your wheelchair can be frustrating. You may have worked hard to return to the every-day normal activity of shopping so you could live an independent life like everyone else around you.

What is different about you is pointed out to you and you are fully aware of this difference. But the underlying assumptions of what people say can be patronising and disabling. Take the common saying:

“I think you’re inspirational for doing your food shopping!”

The possible assumptions could be:

  • “Poor you! It must be awful to have to use a wheelchair/stick!” – This comes across as patronising. It can also be a subtle way of the speaker saying, ‘You are worse off than me.’ One person is greater, one person is less than.
  • “Wouldn’t it be easier for you to have it delivered?” – This could be a subtle discount of the person’s abilities to do their own shopping in a wheelchair.
  • “I could never do that. That must be so hard. I find it amazing you can.” – If you ever become injured or ill which causes a disability, you may need to find a way yourself.

But you can have the opposite experience as in Billy’s story where people rally around you and support you to return to as full and active life. And people treat you the same as any other person.

Feeling that one is ‘disabled’ is a very subjective experience

Every person is different. You may mind being defined by your disability, or you may not.

You may define another person by their disability, but they may not do that for themselves.

You may not mind being defined by your disability, but you may very much mind the impact of having a disability means for getting out and about and contributing in our society as Hannah Cockroft points out so well in this video. Our built environment is certainly not accessible to everyone no matter the disability they have.

You may not want to be defined by your disability but appreciate what you’ve learned or gained as a result of your life post illness or injury which now defines you.

You may or may not mind being defined by your disability but you wouldn’t hesitate to return to your life pre-disability if you could.

So when is being defined by your disability a good thing?

It depends. There can be so many responses to this. It’s not an either-or issue. There is no right or wrong way to be. Whether or not you feel defined by your disability and whether that is a good thing or not is a very individual experience.

The picture contains a box on the left which has Good in it and a box on the right which has Not Good in it. There are nine boxes in between and they are various shades of grey. Among the boxes is written: All the shades of grey and contradictions. And the caption says, 'Being defined by your disability can be all of this.' There is a man sitting on the Not Good box saying, "See me for me." There's a woman with mobility sticks standing under the Good box saying, "It helps when a shop or venue is accessible."

What’s it like for you?

What do you consider to be a disability or when someone is disabled? If you have a disability, how do you feel about being defined by your disability? Or a loved one being defined by their disability? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).  

If you are living with a serious health issue or are caring for someone who is, and would like support to return to a sense of wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

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© Copyright Barbara Babcock 2019

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