The 10 lessons I learned about being a carer

The 10 lessons I learned about being a carer

There was so much I wish I knew about being a carer before I became one. It might have taken the edge off the anxiety I was feeling about my other half’s medical conditions, his recovery, how much ongoing hands on support he would need, what changes it might mean for us in many areas of our lives, was I being a good carer and getting it right, etc. etc.

It’s not like you get a manual at the hospital or GP and ongoing support and advice from an expert to help you deal with this new caring role. You are figuring it out as you go and you often have to proactively find the information you need. So here I summarise the 10 lessons I learned from being a carer to help you in that quest.

Read about the 10 lessons I learned from being a #carer #caring #seriousillness #chronicillness #seriousinjury tell a friend

 

This all comes from the reflection I’ve been doing this past month on the impact of a serious illness/injury on a relationship. It was our wedding anniversary a month ago, this month is my 10th year anniversary of having had a serious neurological illness and next month will be 5 years since my husband had his brush with mortality. So a lot has been going through my mind including my experience of being carer and the caring role.

 

Picture of a man sitting down and reading a booklet on Return to Wellness's 10 lessons on being a carer

 

Here are the 10 lessons I learned about being a carer

 

Lesson 1 – A serious illness or injury can put long simmering issues in your relationship into perspective

To the point that you realise that the long simmering issue is no longer an issue. The illness/injury event feels much more serious. For example, we moved from a flat into a house but I didn’t feel the need to move. The flat was big enough for us both I thought. But we moved because my husband was very keen to. I was finding the transition difficult. The day my husband unexpectedly went into hospital, it was like something switched off in my body. The house was no longer an issue as I had other much more important things to deal with.

Or maybe the issue is still very much an issue, and an important one to you, so now you are galvanised to do something about it. A serious illness or injury can cause us to face our mortality. And when we do that, we realise what is most important to us, and what we are willing to do and not do.

 

Lesson 2 – If you’re the carer, it’s not uncommon for your other half to get angry with you.

 

Despite all you have been doing for them, some things you just won’t get right. You are learning too. My husband once got upset with me in the early days of him dealing with his medical conditions when I struggled to get meals cooked on a schedule which would help him manage his sugars. It was tough.

I was trying my best and struggling with the impact of everything. I gently told him that I was impacted too, was trying and would look again at how I could schedule my work differently to get meals out on time.

It’s important to deal effectively with your loved one’s anger and I wrote about how to do that here, so I encourage you to read it. What you don’t want to do is take on and carry other people’s anger as they takes a lot of your energy which you need for yourself.

 

A woman being a carer is holding on to the ball of her other half's anger and has dropped the ball of her own wellness

The potential impact on the carer when you hold on to someone else’s anger

 

Lesson 3 – As the carer, you’ll get angry with your other half too.

 

You can become angry because you feel frustrated with yourself, that you are getting things wrong as the carer. Like I said before, it’s unlikely you have a ‘how to be a carer’ manual on your bookshelf.

Or you may be angry over what has happened with your loved one, the pain and changes they have had to endure. It’s hard to see our loved ones ill or injured. We want to take their pain away.

Or you may be angry over the impact the illness or injury has had on your lives and the changes you and your loved one have had to make as a result. In cases like this, the anger is more often directed at the impact of the illness or injury has had.

Or the anger be a cover for another emotion like sadness and grief, which is often the case for the previous two examples.

Or the anger could be more about other relationship issues which have pre-existed prior to the illness/injury. And the stress of dealing with the impact of the illness/injury is fuelling the anger.

Whoever is getting angry, at its worst, it can lead to blame and shame. That is what you want to avoid.

Dealing with #seriousillness #seriousinjury #chronicillness can be stressful so it’s not uncommon for you and your loved one to get angry with each other. Just make sure it doesn’t lead to #blame or #shame tell a friend

 

So do a quick self-check on your anger and ask yourself:

What am I really angry about?

Am I really angry with my other half for getting ill/injured?

Am I angry about the impact it has had on my life? Our lives?

Am I angry at the illness/injury?

Am I angry at having to deal with all the stress?

Or am I angry about another aspect of our relationship which has nothing to do with the illness/injury?

If my anger was covering other emotions, what would those emotions be?

I want to say though that anger is not a bad or forbidden thing. It’s about how you deal with it which is key.

 

Picture of questions to help you sense check your anger when being a carer.

 

Lesson 4 – What you can do together as a couple changes so adapt your approaches and/or find new things to do together

 

This can relate to the anger mentioned in points 2 and 3.

What you are able to do together as a couple may have to change. It may be sex. It may be a spontaneous afternoon out. Or a night out in the pub setting the world to rights over a few beers.

Your circle of friends may also change.

My other half and I used to do that night out or Saturday afternoon in the pub setting the world to rights. But for medical reasons we no longer do that. I miss it because we enjoyed a conversational intimacy where we connected in a different way.

You may no longer be able to do the activity, or you have to adapt how you approach it, and find new activities and friends. I think this is incredibly important. This leads to my next point.

 

Lesson 5 – Illness and injury can be intimacy killers. Nurture intimacy. Make it a priority in the relationship.

 

Important to nurture #intimacy in a #relationship when a #seriousillness #seriousinjury #chronicillness enters it. And intimacy can occur on several levels. Read more about that here tell a friend

 

This too is incredibly important. I feel intimacy can occur on different levels.

  • Sex
  • Holding hands, hugs, kisses, holding one another
  • The nature of your conversations – both surface level and deeper conversations
  • Humour
  • Sharing hobbies and interests – cooking together, sport, photography, whatever
  • Being mindful of the other person – Their loves, hates, needs, desires and wants

 

Picture of the levels of intimacy in a relationship (there can be more). Sex, holding hands, hugging, kissing, the tone of your conversations, shared interests and hobbies, being mindful of the others needs, wants and desires.

 

There may be more which are a feature in your relationship. Some of those levels may be important to you in your relationship or not. Some may be important to one of you but not the other.

But how you continue to connect as a couple is super important. Particularly if there are issues and you want to remain as a couple. Again, get help if you need to.

 

Lesson 6 – Fill your own cup first

 

Caring can be bloody hard work. Not only do you have your responsibilities, you often have to take on their responsibilities for a period of time or for forever more. On top of that you are going to great lengths to look after your loved one, making sure they are ok and have what they need. Whilst being a carer, you play many roles. And you have your own life too.

But there can also be joy in caring. There is nothing like feeling like a team, working together, each knowing your role so one of you (or both) can find a new version of health again within the illness/injury. In some cases, depending on the illness or injury, your other half may not be alive or be in a worse state if it wasn’t for you and your efforts.

Caring is a journey. Caring is a gift you give someone. But to give, YOU HAVE TO GIVE TO YOURSELF FIRST. Because you can’t pour from an empty cup.

 

Important quote when being a carer. You can't pour from an empty cup. Take care of yourself first.

Guideline 1 when you are in the caring/supporting role

 

Lesson 7 – As the carer, it’s ok to ask for what you need from them.

 

You are still a significant part of the relationship, you have needs and they matter. No matter if you have the illness or injury, or are in the caring role, it is ok for you to have needs, to express them and to ask for what you need from the other.

This may require you to let go of old ways of being which no longer serve you, i.e. ‘my needs don’t matter’. This leads on to my next point.

 

Lesson 8 – This often requires you both to have conversations differently than you did previously. If you need to get external help to do this, please do.

 

I wrote about this earlier this month so have a read of this blog.

 

Lesson 9 – Trust is an essential ingredient

 

This is my husband’s contribution to this blog post. He said that knowing you can rely on the person to help and support you when you are very ill or injured is important.

If you don’t have that, if it wasn’t present in the relationship prior to the onset of the illness or injury, are you willing to continue? It’s a hard question, I know.

 

Lesson 10 – Finally, a well-tuned sense of humour helps. A lot.

 

My husband and I both enjoy humour. A lot. After nearly 20 years together, we still make each other laugh. Every day. We connect through our humour. It has taken the edge off of life or death situations.

Like the time he was in hospital having just had a life-saving procedure and he had to pee. I gave him the bedpan for men which looked like a snail to me. So I named it. I then had to carry Mr. Snail full of my husband’s wee and give it to the nurse. I then referred to the bedpan as the Royal Wee. Bad humour I know. But we smiled and that helped us to keep a sense of balance.

 

What’s it like for you?

 

Do any of the lessons above resonate with you? What lessons have you learned from being a carer? 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 caring for someone who is, and would like support to deal with issues you are experiencing, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

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Protect your relationships. Uncover your unconscious biases and assumptions around illness

Protect your relationships. Uncover your unconscious biases and assumptions around illness

Last week I wrote about how the unconscious biases and assumptions around illness, injury, recovery, disability and health you hold tend to become more visible when you have to deal with these issues. They test that ‘in sickness and in health’ vow in a committed relationship. And they can make or break a relationship.

The unconscious biases and assumptions around #seriousillness #seriousinjury, #recovery #disability and #health you hold tend to become more visible when you have to deal with these issues. Read more about it here. tell a friend

 

But to do what you can to ensure your relationship remains in a good enough place, it helps to become aware of the unconscious biases and assumptions around illness you hold and figure out if they are helpful or potentially harmful to your relationship.

Last week I shared examples of what some unconscious biases and assumptions around illness look like in action. This week I share the process to uncover your own.

So this blog gives you an opportunity to have a quiet and gentle think. If you like to write your thoughts because that helps you to clarify them, then do that. But you don’t have to.

 

Woman sitting on a course reading a Return To Wellness newsletter about unconscious biases and assumptions around illness

 

How to uncover your unconscious biases and assumptions around illness

 

Your unconscious biases and assumptions around illness will underpin what you mean by health, illness, disability and recovery (how you define them) and even how they come through in your behaviour.

 

Ask yourself these questions to uncover the unconscious biases and assumptions around illness you hold which may be helping or hindering your relationship

 

  • What are you like when you are ill or in good health? How do you treat yourself? What do you expect of others around you?
  • What are you like when others around you are ill or in good health? How do you treat them? What do you expect of them when they are ill? And what do you expect of yourself?
  • How sick do you and others have to be to be considered sick?
  • When is getting sick or injured due to your actions and hence your ‘fault’? And when is it not?
  • Regarding recovery, do you expect yourself or the other person to go back to the way they were pre-illness or injury? What if you/they don’t?
  • Do you believe that being positive will aid recovery? Where does being negative fit into the recovery process?
  • What if you or your other half or child looks ok but says they are tired all the time? And they sleep a lot? Or they say they are in pain? But they look fine, well even?
  • What if you or your other half or child becomes disabled physically and/or cognitively? How would you feel about that? What would you do? What do you think you would find really difficult?
  • You hear of someone who had a serious accident and was disabled as a result. You’ve heard they got back to work, are continuing their lives and they seem well and happy. Do you find them to be an inspiration? Why is that?
  • You’re on Tinder swiping away. You read a profile you like, get in touch with the person and through corresponding you learn they are a wheelchair user (or have mental health issues or another long-term condition). Do you meet up with them for a date? Why or why not?

 

These questions require you to think about your thoughts, behaviours and expectations of yourself and others. Some of them have been provocatively worded to elicit a response.

 

Then dig a little deeper

 

When you respond to the above questions, then ask yourself, ‘For these responses to be true, what do I have to assume about myself? And others? And what beliefs are these assumptions based on?’

For example, if you responded that you are only considered ‘properly’ sick when you have a really bad case of the flu and cannot function or have to go to accident and emergency at the hospital.

What do you have to assume about yourself (or others) regarding being ‘properly’ sick?

Maybe the assumption is, ‘I don’t get sick that much so it won’t happen to me.’ And maybe that points to a belief, ‘I believe I am a strong person with a good constitution.’

 

The pic shows your beliefs underpin your unconscious biases and assumptions around illness which underpin your behaviour. There's a person saying, "You've been ill long enough! Get on with it." And another person saying, "We all get ill. Recovery can take time."

 

How our unconscious biases and assumptions around illness can negatively impact our relationships

 

What often happens is we project these assumptions and beliefs we hold on to others, i.e. what we expect of ourselves, we expect the same of others. This is where couples often get into trouble when a serious illness, chronic illness or serious injury enters the family.

We often project our unconscious assumptions and beliefs about ourselves on to others, i.e. what we expect of ourselves, we expect the same of others. This can be unhelpful for couples when a #seriousillness #chronic illness or… tell a friend

 

For example, one of last week’s examples was when one half of a couple or your parent tells you to ‘get on with it’ – go to work, look after the house and kids, do everything else life throws at you – when you are experiencing ongoing fatigue, pain and/or weakness.

The ‘get on with it’ coupled with the sighs, frustration and remarks of ‘we all get tired’ can feel like this person who is family and close to you, just does not care for you or your needs. That can really hurt a relationship. Their ‘get on with it’ is their assumption about how they, and therefore you, should deal with illness/injury.

 

‘Pre-existing conditions’ in your relationship can also make it more difficult to cope with a serious health issue

 

In addition, how as a couple you deal with the impact of a serious health issue in your family can shine a light on the issues in your relationship which existed prior to the illness or injury. If you both haven’t addressed these relationship issues, they can make dealing with the health issue that much harder.

It’s important you get support and I cannot stress this enough. You may feel it is your other half which needs the support. But there are two people in any relationship and even if something terrible happens to one of you, like a serious illness or injury, you are both affected. There is something about both of you getting support to deal with and move beyond the challenge.

Whichever position you are in, the person with the illness/injury or the carer, if you feel that it’s your other half who needs to change or some kind of support, ask yourself what support you need. We often hear the saying by Ghandi, ‘Be the change you want to see in the world.’ If you want someone else to change, look at what change you can make too.

 

Quote by Gandhi on the Return to Wellness lilly which is Be the change you want to see in the world.

 

What’s it like for you?

 

What did you think of this exercise to uncover your unconscious biases and assumptions around illness? Where there any questions which occurred to you which weren’t listed here? 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, which may be a serious illness or injury or chronic illness, or are caring for someone who is, and would like support to deal with issues in your relationship, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

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How unconscious biases and assumptions around illness can impact your relationships

How unconscious biases and assumptions around illness can impact your relationships

The unconscious biases and assumptions around illness, injury, recovery, disability and health you hold tend to become more visible when you have to deal with these issues. They can test the ‘in sickness and in health’ vow in a committed relationship. To the point the relationship can break down.

Most times that is what you don’t want, a relationship breakdown. But how do you know what unconscious biases and assumptions around illness you hold and are helpful or potentially harmful to your relationship? Is there a way to identify them even if you aren’t dealing with a live issue at the moment?

To give you a flavour of them, I’ll share real-life examples that demonstrate some of the common unconscious biases and assumptions around illness that have an impact on relationships.

 

The unconscious biases and assumptions around #seriousillness #seriousinjury, #recovery #disability and #health you hold tend to become more visible when you have to deal with these issues. Read some of the common ones here. tell a friend

 

What are the common unconscious biases and assumptions around illness?

 

I’ll start by sharing a personal example.

The recovery process from the neurological illness I had was a long one, two plus years. Two months after onset family were visiting and they decided to go for a walk. By the time I walked up the hill behind our flat, I was knackered. I doubted whether I could physically go further and said that. At that time in the illness I had fatigue and it impacted how much I could do.

My husband said I would be fine and encouraged me to do the walk. I doubted it, said nothing and pushed through. When we got back, I slept for the rest of the day and was doubly fatigued the next day.

The thing is, I looked fine. Fatigue is not visible. When we see someone who looks ok, we assume they are ok and can do things like us with no problem. And that is what happened. Now my husband didn’t encourage me out of malice. Not at all. It was ignorance.

But also, he was being well-meaning, trying to ensure I was included in the activity. Also, I didn’t speak up loud enough to make my needs known – to say, ‘Actually, this walk is way too long, I’ll go back now.’ Or, ‘I’ll walk as far as X and then will turn back. You can continue if you want.’

The unconscious bias: If you look fine, you are fine.

This often links to another unconscious bias: So an illness is only valid if it is visible.

Hence why it can be so hard for those of us with invisible symptoms to be believed when we say we are not well.

 

There’s the unconscious bias: If you look fine, you are fine. So an illness is only valid if it is visible. That’s why it can be so hard for those of us with invisible symptoms to be believed when we say we are not well… tell a friend

 

The negative impact unconscious biases and assumptions around illness can have 

 

Picture of a man and woman commenting on the many unconscious biases and assumptions around illness and injury which can impact relationships

Unconscious biases and assumptions around illness and injury can impact relationships

 

Sometimes though, a person’s unconscious biases and assumptions around illness will become known through frustration or ignorance but the impact can be more negative. Here are some examples.

The parent who doesn’t believe the child who has had a serious illness and complains of not feeling well, and repeatedly tells the child to get on with it and stop lying.

This can be based on the assumption that ‘children are to be seen and not heard’ or that a child is trying it on, or trying to get out of doing something like going to school. Or it can be due to lack of knowledge around how an illness can affect a child.

But here’s an important point. A child’s cognitive abilities are not where an adult’s abilities are at. Therefore, their ability to explain how they are feeling is different from ours. Children won’t always be able to articulate how they feel as adults do. And by the time we are adults, we may have forgotten what it was like to be a child trying to explain something to our parents.

Here’s another example.

The partner or your parent who tells you to get on with it – whether that be with cooking the meals, looking after the kids, getting back to work, whatever – but your arms are so weak it’s hard to lift and do things. Or the fatigue is so bad that just cooking a family meal is an effort. But you are repeatedly told, ‘We all get tired.’

This example doesn’t allow for the person to be ill or injured. You have to get on with life regardless. The unconscious bias is one that doesn’t allow for illness or injury to exist.

Or if it does, you have to recover and get back to your pre-illness self as soon as possible. The British sayings of, ‘Keep calm and carry on,’ and ‘stiff upper lip’ come to mind here. The unconscious bias is ‘recovery means you go back to how you were pre-illness or injury’. But that often does not happen with many serious illnesses, injuries and chronic illnesses.

The impact is it discounts the very real issues the person has as a result of the illness or injury. Their experience of their illness is disregarded.

Imagine being on the receiving end of that! It’s hard when you’ve had a life-changing difficult experience with your health and your loved one(s) don’t seem to care or believe you.

It is no wonder you can end up hiding how you really feel and become very lonely and isolated as a result. As a person you can feel disregarded.

And another example:

Sometimes, the person with the illness or injury is denying what has happened to them. Their partner has had to take on their responsibilities in addition to what they normally do. The partner in the caring role says the person with the illness ‘just won’t do what they need to do to get better’.

Denial is a normal response to a life-changing illness or injury. And there can be many reasons for denial. A common one is ‘illness or injury can’t happen to me’. It also comes about due to not wanting to admit the loss of your previous life, which you very much valued. Denial can have negative consequences depending on its severity and how long it lasts.

There may also potentially be an assumption on the part of the carer that ‘if you do what you need to, you will get better’. With some illnesses and injuries, you can do what you need to, but you don’t necessarily ‘recover’ or ‘get better’. As the person with the illness, knowing you won’t ‘get better’ and you’ve got to deal with this health issue for possibly the rest of your life can be a hard thing to face.

 

Pic of the unconscious biases and assumptions around illness and injury which focus on recovery.

The unconscious biases and assumptions around illness and injury which focus on recovery.

 

The lessons I learned about dealing with unconscious biases and assumptions around illness

 

Lesson 1

Moderate how much emotional energy you expend when people behave in a way you wish they hadn’t, i.e. they are operating on their unconscious biases and assumptions around illness. Ensure sure any emotional energy you expend is in relation to the infraction. If we get really upset for every perceived slight against us, that’s a lot of energy.

If the person is being an absolute twat, by all means, tell them what you need to. And talk to someone afterwards and/or write about it to get it out of your system.

Many times, their intention may be well-meaning and their actions may happen out of ignorance. They don’t have the goal to hurt us. I am thinking of the ‘tumeric/apricot kernals/just be positive will heal you’ brigade. When it’s this kind of infraction, it’s about learning to let it go as quickly as possible with little invested emotional energy on your part.

Because your energy levels are important and you have to reserve them for the people and activities who matter in your life.

As in the example I gave above regarding my husband, he wasn’t frustrated or taking it out on me. He wasn’t showing he was fed up with me or my behaviours. There was no bad intent. All it took was for me to educate him about fatigue and what I was capable and not capable of.

Lesson 2

I think that is key – how we let those close to us know what we need and want. You HAVE to find a way to look after yourself – to know your needs and be able to do what you need to do to meet them. No one else is going to do it for you.

Even our other halves won’t always look after us in the way we want them to. I think sometimes we can expect our loved ones to read our minds. But they are not mind readers. So we have to take the lead and let them know our needs.

 

Our partners won’t always look after us in the way we want them to. We expect them to read our minds. But they are not mind readers. So we have to take the lead and let them know our needs. #seriousillness #chronicillness… tell a friend

 

Lesson 3

The points I also made last week about communicating with your partner are also relevant here so I recommend reading that blog. How you communicate your needs can make all the difference.

If communicating together is difficult, it’s ok to get help. An objective third-party professional can help you learn new ways to communicate with each other where you both start to feel more seen, recognised and understood by the other.

 

Pic of the lessons learned from dealing with unconscious biases and assumptions around illness and injury.

The lessons learned from dealing with unconscious biases and assumptions around illness and injury.

 

Come back next week when I will share an exercise on how you can uncover the unconscious biases and assumptions around illness which you may hold.

 

What’s it like for you?

 

What unconscious biases and assumptions around illness have you come across in your relationships? Which ones were helpful and which ones hurtful? Share your thoughts or questions in the comments below or alternatively email them to me (form below).

If you are living with a serious health issue, which may be a serious illness or injury or chronic illness, or are caring for someone who is, and would like support to deal with issues in your relationship, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

If you want to leave a comment privately, complete this form. If you want to leave it publicly, keep scrolling.

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When the wedding vow in sickness and in health is tested by illness or injury

When the wedding vow in sickness and in health is tested by illness or injury

A life-changing serious illness or injury can test the wedding vow “in sickness and in health” and hence your relationship on many levels. If you chose the marriage route and/or if this was a vow in your ceremony. Regardless, it is commonly accepted that however you commit to a relationship with another person, you stick with them in sickness and in health, through the good times and the not-so-good times.

Last week I was reflecting on relationships and the wedding vow in sickness and in health. Because it was our wedding anniversary, we’ve been together nearly two decades and during it we’ve had to handle many big life events. This included the neurological illness I had 10 years ago and the brush with mortality my other half had. We’ve had more than one wake-up call to life.

A life-changing serious illness or injury can test your relationship on many levels. And thereby the wedding vow “in sickness and in health” #seriousillness #chronicillness #seriousinjury #marriage #relationships #weddingvows tell a friend

 

So here are my reflections on how I think illness or injury can test the wedding vow in sickness and in health and what it is the couples who get through it intact do.

 

A couple saying the wedding vow in sickness and in health to each other.

What does the wedding vow in sickness and in health mean to you?

 

What do we mean by the wedding vow in sickness and in health?

 

In supporting people over the years who’ve been affected by a serious health issue, I’ve seen relationships break down. A life-changing serious illness or injury is incredibly stressful for the person who sustains it and those close to them. There can be so many reasons for it. A central one is one half of the partnership is changed in some way, whether it’s physically and/or mentally. Here are some examples.

People can find uncertainty stressful – “How will I/my partner feel today? What will they be able to do?”

“I feel guilty, like a burden. My partner deserves more than this.”

The person in the caring role may not be used (or prepared) to having to help someone to the degree they have to now.

You can no longer do some or a lot of the activities you used to do together and which defined you as a couple – walking outdoors, rock climbing, having a ‘setting the world to rights’ session in the pub.

You can’t have sex or the experience of sex is different particularly if the illness or injury has resulted in sexual dysfunction.

One of the person’s priorities for their life change and become very different from the other person’s.

The stress of the current situation exacerbates issues between the couple which existed prior to it.

The other person leaves the relationship and this can be on any number of levels. Maybe they become distant. Or interact in a very different way with you, have an affair, or they walk out not wanting to deal with the situation. It can be heart breaking.

 

A reason that I often hear is, ‘You are not the person you used to be.’

 

The cynical and frustrated part of me wants to use fruity language and say, ‘No-shit Sherlock.’

 

A reason for relationship breakdown after a person experiences a #seriousillness or #seriousinjury can be ‘You are not the person you used to be.” Read why that is here. #relationships #marriage #weddingvows tell a friend

 

But that sentence, ‘You are not the person you used to be,’ highlights a difference.

No, you are not the same person after you or a loved one experiences a serious illness or injury. You are you, but you are not you as I wrote about last week. Such an experience will change you.

And people have different tolerance thresholds for difference. Some people can see past the difference to the person they married/committed to and to what they still have in common and consider important. Other people may not be able or willing to. Willingness is key.

 

Everyone has a different threshold for tolerating difference. This is a key reason behind whether couples stay together or breakup after one of them has a #seriousillness or #seriousinjury #relationships #marriage #weddingvows tell a friend

 

How much sickness and health can you live with in this wedding vow in sickness and in health?

 

What do you mean by health? And sickness? In the context of a partnership or marriage, how much health and sickness are we willing to deal with? At what point do we say, ‘No, that’s my limit. I can’t/ won’t deal with that.’

Notice the words can’t and won’t.

Can’t is about ability.

I don’t know what to do. I don’t have the skills.

Won’t is about willingness.

I am willing to do this. I am not willing to do that.

But sometimes can’t can be a cover for won’t.

How much sickness and health can you live with in your relationship? And are willing to?

How much sickness and health can you live with in your relationship?

 

Although I am focusing on the impact of illness on the wedding vow in sickness and in health, it can work the other way around. Where one half of a couple starts to live much more healthily than previously but the other half makes different choices. This can cause strain too.

When a couple isn’t on the same page (or near enough pages) regarding a big issue, and they cannot find a way to work through it together, conflict can arise.

 

Relationships can become stronger due to a serious illness or injury

 

It may test the couple and be incredibly stressful and the couple come through it. In my experience, this is what helps.

Read about what a couple can do to get through the stressful period of a #seriousillness or #eriousinjury to stay together and grow stronger #relationships #marriage #weddingvows tell a friend

 

They are honest about the situation. They would rather not be dealing with it. But they are

The couple keep communicating – the good and the bad.

The couple are willing enough to learn different ways of communicating to have the conversations they need to. When they the difficult situations, they are honest.

There’s a focus on behaviours, ‘When you do X, I feel Y.’ Rather than an attack on the person, ‘You’re being rubbish to me!’ ‘You’re a twat!’

Both parties own their feelings using ‘I feel…’ rather than project ownership of their feelings onto the other person, ‘You make me feel…’.

The person who has the illness or sustained the injury isn’t blamed for it. The illness/injury is treated as separate from the person.

They find a way to deal with issues. How they are dealing with it may not be 100% satisfactory to one or both of them, but they recognise and acknowledge that. It’s about finding what is good enough and works for now and having willingness to adapt as things change (like with sex).

As they are both changed by the situation, they are willing to get to know each other all over again. To rebuild their lives and find new activities they can enjoy together as a couple.

They are willing to accept help from others.

In short, the couple commit to travelling on the same road whilst having the illness/injury on their journey.

 

A couple walking on the same road with together with the illness or injury which has come into their lives

Couple travelling on the same road with illness or injury

 

What’s it like for you?

 

What does the wedding vow in sickness and in health mean to you? How has that been tested (or not) in your relationship? Share your thoughts or questions in the comments below or alternatively email them to me (form below).

If you are living with a serious health issue, which may be a serious illness or injury or chronic illness, or are caring for someone who is, and would like support to deal with issues in your relationship, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

If you want to leave a comment privately, complete this form. If you want to leave it publicly, keep scrolling.

 

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Managing expectations at work after illness or injury

Managing expectations at work after illness or injury

Managing expectations at work after illness or injury is so important in ensuring your return to work is a good enough transition. And linked to this is what you tell people.

You may be wondering what to say to people, if anything, about what happened to you. You may be thinking it’s none of their business, or maybe you wish to say something to certain people. Or maybe you are happy to tell people everything.

How much information we share is different for everyone, so it’s your decision regarding how much you share. However, how much you say to whom about the illness or injury you have (or had) has a link to managing expectations at work after illness. The expectations you have of yourself and what others have of you regarding what you can do at work after a serious illness or injury.

How much information you share about your illness or injury and its impact on you links to managing the expectations of yourself and others when returning to work #seriousillness #seriousinjury #returntowork #healthcoaching tell a friend

 

If expectations are managed appropriately, then everyone is on the same page and it limits misunderstandings. So this blog is meant to help you think through what you want to tell people and how much information you may need to give them so your return to work is a good enough transition. I give you a series of questions to help you do that.

 

Who do I need to tell?

 

It’s the key people you work with the most often and/or will be involved in your return to work. They typically include your line manager, their boss, Human Resources (HR), occupational health (if your company has one in-house or work with an external provider), fellow team members, and your own team if you have people reporting to you.

There may also be other people internally and externally in your organisation with whom you work. How much you tell them, if anything, can depend on the type of work you do together, how much you work with them, and your relationship with them. You don’t have to tell people everything. And some people don’t need to know anything.

 

What do these people expect of me?

 

Having an idea of what you think people may expect of you is a starting point for discussion. It’s also an opportunity to identify any assumptions you are holding about others which may not be true or helpful to your return to work.

Give these questions some consideration.

  • What do you think your line manager, their boss, HR, occupational health, fellow team members, people who report to you, and others expect of you in this return to work process (other people internally, clients, etc.)?
  • What do you expect of them? Your expectations may be different for each person. And there may also be themes in what you expect from people generally.
  • What do you expect of yourself?

 

Three questions to help you identify your own and others expectations of you when returning to work after illness

To manage expectations when returning to work after illness or injury, you need to know what they are.

 

Some common responses I’ve come across include:

  1. They will get rid of me if they knew I fall a lot/ am incontinent/ need to take more breaks, etc. (insert how you are affected now).
  1. I worry they will expect me to go back to the way I was before my operation. But I am not sure yet I can do everything I did before.
  1. I expect my employer to sort things so I can return to my job like before. There’s not much for me to do.
  1. I have no idea what to expect. My boss has changed and I haven’t even met the new boss yet.
  1. I have no idea what my team members expect of me. I don’t know what I expect from them.
  1. I expect it will take me a few weeks to adjust and then I’ll be fine to work full-time like before.

First, be wary of making assumptions of what others are thinking such as the ones in points 1 and 2. We cannot mind read and if we do and then act on those assumptions, we can end up creating a difficult situation for ourselves. And that is the last thing you want to do.

Make sure to check with your employer what they expect from you as you return to work after a #seriousillness #seriousinjury This can help you identify any unhelpful assumptions you may be holding #returntowork #healthcoaching tell a friend

 

I would caution against leaving your employer to do everything as suggested in point 3. If you do this, you kind of take yourself out of the process and become a passive recipient. And you may not like what comes your way. There are things you can do to help your employer help you. This blog and the previous two I wrote (here and here) about returning to work are meant to help you do that.

On points 4 and 5, then give a good think around the questions on what you expect from yourself and others. If you have a new boss you haven’t met yet, then that is an added consideration. You have a whole new relationship to establish. I won’t go into detail on this point, but I want to acknowledge that it can happen.

On point 6, prepared to be flexible on how long it will take you to adjust to working again and the changes which may have happened in the interim at work. Recovery from illnesses and injuries do not work to our own or others’ timescales. Sometimes the process may be slower than anticipated, or like two steps forward, three steps back. That is normal. When something like that happens, of course it’s disappointing. It is also a sign that we may have overdone it and it can give us information on where our limits currently are.

Be honest with yourself from the start and set a realistic timetable for returning to work. This can be revisited and adjusted as time moves on.

 

What information can help in managing expectations at work after illness?

 

I often find that the employer wants to know if you can do your job as you did before and how long it will take for you to get to that point. If you won’t be able to do your job as before, they often want to know why that is, and what does it mean for your future in terms of what you can do. And they want to know what you can do now.

This can feel kind of invasive. Your employer may want to know a lot about you. Knowing this helps them to plan on how to get the work done, and you and your job are a part of that plan. And you only need to give them information as it relates to you in your role at work.

I often find the employer needs reassurance from a third party ‘expert’ in your illness or injury, like your doctor, occupational health, and/or info from a charity. Some people who find their employers wanting such information can assume their employer doesn’t trust them and focus on that. And the relationship can go downhill from there.

When you assume that your employer doesn’t trust you and you operate from that assumption, it doesn’t put you in a resourceful state to deal with the situation. Instead, think of what information you can provide to back up what you are saying and to educate them regarding your needs. This can go a long way in managing your employer’s expectations.

 

How has the illness or injury affected me? How might that impact my ability to do the work I do with each of these people?

 

The previous blog in this series on returning to work addressed the question on the impact of your illness or injury on your capabilities to do the various parts of your role. That blog contains advice on how to start figuring that out prior to returning to work so I recommend a read.

Think through the role you do and how the illness/injury you have/had might impact your ability to do the work you do with each of these people.

Then ask yourself…

 

Based on that, in which parts of my job do I need support from others?

 

For example, some tasks may take longer because of fatigue, mobility issues or chemo brain and having longer lead times for projects would be useful. Or you may require help at times with finishing a task. Or you physically can no longer work the hours you used to so the amount of work you can do has to change.

Or you need to work two days a week from home because the commute is very energy draining so people need to know how to contact you. Or maybe you don’t need people’s support with certain tasks. But you just would like people’s understanding and patience.

Think through those tasks you may need help with, what you feel you can do, what you know you can no longer do, as this will help you identify your needs and where and when you may need help from others. Also think about who can provide support and what kind of support they might be able to provide. This is particularly relevant to those with whom you work closely – your boss, team members, and people who may work for you.

Share what you need from people. I know this may sound odd or even downright scary. In our society, it’s not looked on favourably to have needs and I wrote a series of blogs on that topic here. However, most people like to help others and are happy to. But to receive the right kind of help, you need to know what help would best suit you and to communicate that to people.

 

Most people are happy to help you during your return to work after a #seriousillness #seriousinjury But to receive the right kind of help, you need to know what help would best suit you and to communicate that to people… tell a friend

 

And based on that, how much information about the impact of my illness or injury should I give to people?

 

It can help to give people some information on the condition/injury you have to help them put into context the impact of that illness or injury on you and your current needs. So if you have fatigue and your brain works more slowly and you are in a job that requires a lot of brain power then you may wish to say how the illness/injury you had can cause fatigue and impact the brain.

This is particularly important for conditions where the impact on you is invisible, for example, fatigue or chronic pain. If you share nothing about the impact of your illness or injury, people may not understand why you require adjustments and support.

When people are left with little information, they often start to fill in the blanks themselves. And the story they create in their heads may not be correct, which won’t help you if they start acting on the story they have created. It makes it much more difficult for you to manage their expectations.

Also, I want to share a point on the concept of recovery. People often assume recovery from a serious illness or injury means you go back to the way you were. That is often not the case. Not only can your body be changed forever, but also how you feel in your body and about the whole situation and what it means for you. This is an area where stigma and bias can make an appearance. I’ve written about that and dealing with it here, here and here.

 

In our society there are biases and stigmas which surround recovery from an illness or injury.

The biases and stigma which surround recovery.

 

A side benefit of providing just enough information can be to educate and even reduce the stigmas and biases that exist in our society around the capabilities of people who have experienced a serious illness/injury. This too can help with managing expectations at work after illness.

You may not need to give everyone the same amount of info. Give people what they need to know in order to support you and you to support them. People may talk among themselves so you may find others you did not give much information to learn of additional information from others. So, if you don’t want people to share, say that up front. You can’t control whether they share or not at the end of the day. But you can state what you would like and if they have agreed to that but then act contrary to it, you can then go back and ask them why.

When returning to work after a #seriousillness #seriousinjury, you may not need to give everyone the same info about your illness/injury and how it affects you. Give people what they need to know in order to support you and you to… Click To Tweet
Questions to think about to help you in managing expectations at work after illness

Questions to download and have a think about.

 

Finally, regular meetings are key to managing expectations at work after illness

 

Regular meetings with the key people you work with are important to keep the lines of communication open, which in turn are important in managing expectations at work after illness. These meetings are good for discussing your progress, any challenges and planning how to meet them, how the support you need may be changing, and to discuss any updates on your medical situation which is relevant to your return to work. Occupational health can be involved in these discussions.

Given that there can be a lot of unknowns regarding your recovery – what your recovery will be like and how long that will take – these meetings also allow you all to acknowledge the unknowns and plan around them.

The people involved in these meetings are usually your line manager and maybe even HR. Meeting with team members and people who work for you tend to focus on the jobs you all do, progress being made, and what support you need from each other.

And if you demonstrate proactivity in these meetings by scheduling them or encouraging they are scheduled, coming prepared, sharing information relevant to your return to work, etc. that makes you look good. You are doing your bit to help your employer help you.

 

Picture of a woman being proactive in asking her boss for a meeting about her return to work after illness

No one will be proactive for you. It is only yours to do. Getting support can make it easier to do.

 

What’s it like for you?

 

How much information about your illness or injury are you comfortable disclosing to people you work with? What advice do you have to share on managing expectations at work after illness. Share your thoughts in the comments below.

If you will soon be returning to work after a serious illness or injury or are already in the process of doing so and want to work through the questions in this blog and have a sounding board as you do so, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

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Support for carers – 4 things to consider to help you care effectively

Support for carers – 4 things to consider to help you care effectively

There is good support for carers out there, but I’ve found there are some things which aren’t always explicitly talked about. And if carers knew about them, which are often of a psychological nature, they would realise what they are experiencing is normal. This awareness would also reduce the chances of the carer operating from the dark side of helping.

So I am going to share 4 things to consider as a carer to help you in your caring role. (There is more I am sure, but this is a good enough start.) This is the last post in a blog series about the dark side of helping people whose capabilities are limited by illness or injury. It is meant to support those of you in a caring role whether you are a spouse, partner, another family member, friend, colleague.

 

But a quick recap on what the dark side of helping is

 

In the first post, I explained that the dark side of helping is when someone helps another, and the person helping hasn’t asked if it’s needed. It’s a proactive form of help, which is deemed to be a good thing in our society. But it has been assumed on the part of the helper that the person being helped needs or wants it. The person being helped hasn’t asked for it, so it may not be wanted or needed.

Pic of man insisting on helping a person who uses is sticks and is carrying a bag, the dark side of helping

 

In the second post, I wrote about the impact the dark side of helping has on the people on the receiving end of such help, their views of it and the reasons for that. The third post focused on proactive strategies you can use to manage situations where you are holding on to their anger and getting angry yourself.

So let’s move on to the four phenomena which happen but aren’t often talked about and what it means for you as the carer.

 

Support for carers 1 – Being able to withstand difference to support effectively

 

So much is required of you to enable you to support someone effectively. It can take a lot of patience on your part. It is so important that you have good support from people you trust, respite breaks when you can, and your own life. This all enables you to top of your inner-resources so you can stay with and keep going without wearing yourself out.

Pic of a carer's balance account of inner resources getting low and people offering to help

It’s important to keep your balance account of inner resources topped up.

 

If you’ve known the person you are caring for for years, it can be very hard to see them so different. This is a big test for some. Can you withstand standing before this difference that feels uncomfortable for you? Can you give yourself the time to become more comfortable with it? Support from others can help you do that.

 

Support for carers 2 – Being able to notice and sit with your discomfort and anxiety

 

Sometimes when we are very uncomfortable with a person or situation which is so different from what we once knew, it can highlight the anxieties we consciously or unconsciously hold about the difference. For example, seeing someone formerly physically active who no longer is due to an illness or injury. We can feel (even on an unconscious level), ‘That can be me one day,’ and that can be hard for some people to experience. Or you could be thinking, ‘I didn’t sign up for this. This wasn’t in my life plan!’

It can also highlight our assumptions of illness, health, disability and capabilities. For example, some in society think that if you have a disability, you are no longer capable, or being ill is somehow a bad thing. But others feel that a disability means being differently abled. (I opt for the latter as it is the realistic scenario. Just because your body doesn’t work like other people’s, it doesn’t mean you are deficient in any way. You have the same dreams, hopes and fears as everyone does. You have a difference and finding ways to adapt your approach to do what you want in life is key.)

When we help from a place of anxiety and assumptions which discount the abilities and desires of the person we are helping, we often do it to calm our anxiety and reduce our stress levels. That ends up taking precedence over the needs of the person we are helping rather than there being a reciprocal relationship where the needs of both people are met.

To help effectively we have to learn to recognise when our anxiety and unhelpful assumptions are triggered and be able to hold that whilst helping people in the way they wish to be helped.

To help effectively we have to learn to recognise when our anxiety and unhelpful assumptions are triggered and be able to hold that whilst helping people in the way they wish to be helped. tell a friend

 

Support for carers 3 – Getting to know the ‘new’ person, getting to know yourself now

 

Linked to this, you may feel that they are a different person. They are to some extent because of the all the change they are dealing with. Yet they are still the same person they were before the illness or injury. You know that too. It can feel like a contradiction and I’ll explain why.

When a loved one has a life-changing #seriousillness or injury they often feel like they don’t know themselves anymore. This is normal. Read the reasons why here. tell a friend

 

The person who has become ill or injured is going through a process of re-defining themselves. They may not be fully aware they are going through this process. It involves figuring out who they are now as a result of the illness/injury and who and what they want to become. That unfolds as they go about living their life with the consequences of the illness or injury, figuring out what they are capable of now, etc. And this is the only way to do it. It’s not a process where you arrive at an end destination, find your new self, put it on and go, ‘Ta da! Here I am world! The NEW ME!’

 

Pic of person trying to buy their new self-identity and sales person telling them it's free out there in the world

Finding your sense of self again isn’t like buying something. You have to live your life to discover your new identity.

 

Also, many of their personal traits, characteristics, likes, dislikes, mannerisms, etc. that existed before the illness/injury are still there. This also needs to be integrated with who they are becoming.

This process of redefining themselves is about integrating the person they were before with the person they are becoming so they can function in their life in the way they want. It is no small psychological effort. We aren’t given a handbook when we get ill or injured on how to go through this process.

As the supporter, you too are going through a similar process. Your life and relationship are also different after the person’s illness/injury.

When you are supporting someone, particularly if you live with them, there are two of you going through this process at the same time (more or less) in addition to dealing with the realities of the person’s illness or injury. That’s a lot.

And if you have children, they too are going through a variation of this. Everyone is evolving and adjusting, trying to figure things out. It’s no wonder there can be an upheaval in family relationships after an illness/injury/disability enters the family.

 

Support for carers 4 – Giving new meaning to the relationship

 

The person who has acquired an illness or injury may no longer be able to participate in activities that were a key feature of your relationship – taking turns on doing everyday activities like running errands, cleaning or mowing the lawn, cuddling together on the couch on a Friday night, sex, spending a leisurely weekend afternoon in a pub drinking, walking up a mountain, etc.

You may be wondering what does the relationship consist of now? What gives it meaning?

The relationship can feel like it is in a very uncertain no-man’s land. Not everyone can exist in such a place and travel though it to come to a new place regarding the relationship. It’s important that you both find ways to talk about it with each other and you both have a variety of support (keep in mind that it’s very hard to be everything to one person). Working together to adapt how you approach activities you used to do together and finding new activities can help ensure your relationship stays on a path you are both satisfied with.

Pic of support for carers 4 things to consider in the caring role

Support for carers – 4 things for carers to consider

 

And more support for carers…

 

Finally, whilst writing this series, I came across this report called ‘Good and bad help: How purpose and confidence transform lives’. It echoes ideas I have been sharing across this series on the dark side of helping.

This report focuses on providing good help at the organisational level: NHS services, social care, or help in the community. Yet the ideas contained within can be applied at the individual level. Have a read! It’s very good.

The report was published by Nesta, a UK charity which is an innovation foundation working on the big challenges of our time in partnership with governments, businesses and charities. I’m including it here on my own initiative, Nesta hasn’t asked me to. But they are aware I am mentioning it.

 

What’s it like for you?

 

Do you recognise these four phenomena? What has your experience been like in dealing with them? Is there any other support for carers you found helpful? Share your thoughts in the comments below.

If you are living with a serious health issue, which may be a serious illness or injury or chronic illness, or are caring for someone who is, and would like support for yourself, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although this blog is written in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

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