There are a variety of unhelpful things people can say when you have Long Covid or another energy limiting illness (Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia, cancer, neurological inflammatory illnesses such as Multiple Sclerosis, Transverse Myelitis and others).
And it’s hard to be on the receiving end of that when you’re unwell. I share them here so you know you’re not alone in experiencing them and that they do not apply to you and you get some ideas on how to deal with them.
These things people can say are stigmas which reflect people’s beliefs and assumptions around health, illness and recovery. They are not a correct reflection of all circumstances related to health, illness and recovery hence why they’re called stigmas. The unfortunate thing is they can be a widely held view in society. Which doesn’t make it easy for you.
Unhelpful things people can say when you have Long Covid or another energy limiting illness
These are the most common ones I’ve come across in my work as a coach supporting people who are dealing with energy limiting illnesses, in research and leading a charity. You may have some of your own to add to this list.
This statement assumes you control the recovery process.
You do have some control, which I wrote about here, but not 100%. Also, with Long Covid, you can experience fatigue quite badly which can restrict what you can physically and mentally do. I’ll speak more on fatigue below.
The other assumption is: Recovery means you go back to the way you were pre-illness or injury.
This is a very common assumption in our society. It does happen with many illness and injuries like the common cold, flu, a broken arm or leg. So you naturally hold the expectation that you will and should go back to the way you were. But when that doesn’t happen, that’s when the challenges and difficulties can start.
The stigma reads: You must not be a hard-working person. You don’t care about your health.
You’re not really ill
People tend to say this when an illness and the symptoms you experience in relation to it are invisible. You can look perfectly fine on the outside.
The assumption is: You look well so you must be healthy and feel fine.
But you don’t.
The stigma reads: If it’s invisible, it’s not real and hence not valid.
And that’s not true. You can look well on the outside, feel downright awful on the inside and be ill.
People can equate the experience of fatigue with regular tiredness. But fatigue is very different from tiredness. Here are a couple of examples.
You’ve just done a long haul flight and are badly jet lagged. You’ve also been looking after a crying baby for the last 72 hours so haven’t had much sleep and the baby doesn’t look like they’ll settle for tonight. And you’ve caught a nasty flu on the plane.
Your eyes feel really heavy and you feel tired. But you need groceries so you walk two blocks to the supermarket, spend 20 minutes getting your groceries, and walk the two blocks back to your flat. It’s noon. You have to sleep for the rest of the day and that night too to recover. But you wake up the next morning not feeling like you’ve slept. You only manage to shuffle around your flat to eat, use the loo, and lay on the sofa all day.
Some people’s fatigue can be so bad, they have to stay in bed most days. Others may have periods where they feel ok, can do more activity, and then the fatigue gets worse for a time. Often times you don’t know how you will feel day-to-day so it can make planning your life and what you want to do very hard.
Over-exerting yourself can also mean that you end up in bed for a period of time which is longer than you normally sleep. Your body will need this time to recuperate. But how much time your body will need may not always be predictable.
Fatigue is one of those things that you only really understand what it’s like when you have/ had it.
You’re sick again?!
People may say this when they see or hear of you doing more one day or for a period of time, but then you have to do less the next day or for many days due to an exacerbation of symptoms.
With Long Covid and other energy limiting illnesses you can experience a fluctuation in symptoms. Some days the symptoms are mild, or very mild so you feel almost normal, and other days they are very bad.
As mentioned above, there may not be a consistent pattern to this and you certainly cannot predict it. Particularly when you’re in the early phase of an illness; you don’t yet know what might trigger an exacerbation or easing of symptoms.
The assumption is: Recovery is a straightforward trajectory from being unwell to being well again. So there is no getting worse, then getting well, then getting worse again, then getting a bit better, etc.
But recovery from a challenging health issue, especially a new illness like COVID-19 which we don’t know tons about yet particularly regarding recovery, is not straightforward like that. It’s like the pictures here.
What we think recovery is like
What recovery is actually like
The stigma: It relates to the first and second ones above.
You’re not pulling your weight
This links to all of the above. People often say this when they are frustrated with the impact of your illness on them. Particularly if they’ve had to take on responsibilities you used to do whether they are work or home related and so they’re doing more. And of course when you’re not well, you do have to do less.
It’s not uncommon to feel guilty when someone says this. But you also know you did not ask for this illness and certainly did not want it. You just won the winning ticket in a health lottery you didn’t even know you were playing.
When a person says this, in a sense they are saying, ‘I’m frustrated. I’m tired of feeling frustrated and doing the stuff you usually do. Please hold my frustration for me so I can have a break/ feel better/ don’t feel alone in this.’
But you don’t need to hold their frustration for them. And do what you can to put the guilt to one side.
So how you do you respond to unhelpful things people can say when you have Long Covid or another energy limiting illness?
Share information from expert reputable sources
This is information regarding your illness, recovery from it and prognosis, which backs up what you say. It can be from your GP, the NHS, known and reputable medical clinics, and charities. I find that people like to have a third-party reference point from an expert which validates what you say. This can help with the first four items above.
It’s a gentle way of expanding people’s knowledge so they learn how you’re really affected and hopefully, respond accordingly.
But what if they don’t? And they continue to share their frustration with you. There are a few things you can do.
Let them know the impact their words have on you
You can say, ‘When you say XYZ, I feel ABC.’ Make sure to use I statements rather than ‘You make me feel…’.
You can take it a step further if it’s appropriate in that moment and also name the emotional vibe you’re sensing from them. For example, ‘It seems you’re really frustrated. How are you feeling?’
And if you sense the person’s position softening, you can say how you would like them to share what’s going on for them when they next feel frustrated, etc. instead of saying things that are hurtful.
This leads to the next point.
Acknowledge the impact your illness has had on them and you
This is not meant to discount your experience. It’s also not a competition, i.e. they have it worse than you, or a one-upmanship. Not at all. This is about demonstrating empathy for them, their situation and your own. Sometimes this can influence people in such a way that they soften their approach.
Share your appreciation for what they’re doing for you
And I’m sure you’ve done that already.
Encourage them to get support and to take a break
It may require asking family members, friends, or colleagues to help out.
And if none of that works? How do you deal with the continued unhelpful things people can say?
Some people don’t want to change for any number of reasons. This could be the case with the people who have said unhelpful things to you.
They may get a benefit from playing a martyr role. – “Look how much I have to do and sacrifice! I’m such a good person but it’s so hard!”
Some people think of accepting help as a sign of weakness, that they cannot cope. And this contradicts a self-image of being strong.
For some people, learning that the information they thought was correct is not, is an affront to their self-image of always being right. They can’t bear to be wrong.
Some people cling on to erroneous assumptions about health, illness and recovery because they haven’t known anything different in relation to their own health. So if they haven’t had that experience, it just doesn’t exist.
There could be an element of denial of your illness and its impact. The change is too much for them to bear and they may fear it. And/or they may not know how to cope with it.
You cannot control other people
You can only influence them by how you respond to them. And influencing isn’t a 100% guarantee of them changing. So am option you have is to let the energy around worrying what they say go. You need that energy for yourself and your recovery.
People often say that in times of serious illness or injury, they learn who their friends are
Who you can count on for support. This may be the time you review which relationships are worth nurturing and which ones are time to let go or take a step back from.
What’s it like for you?
What are some of the unhelpful things people have said in the course of your or a loved one’s illness? Were any similar to what’s listed here? How do/would you respond to the unhelpful things people can say when you have Long Covid or another energy limiting illness? 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 challenging health issue or are caring for someone who is, and would like support on any of the issues discussed here, have a look at how we can work together and get in touch for a free no obligation consultation.
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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.
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.
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.
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.
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.
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.
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
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.
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.
Pass it forward
Has this blog made you think? Helped you in some way? Share it so it can do the same for someone else.
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.
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.
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.’
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.
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.
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.
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.
Pass it forward
Has this blog made you think? Helped you in some way? Share it so it can do the same for someone else.
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.
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.
The negative impact unconscious biases and assumptions around illness can have
Unconscious biases and assumptions around illness and injury can impact relationships
A person’s unconscious biases and assumptions around illness can 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.
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.
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.
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.
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.
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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.
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.
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.’
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.
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?
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.
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.
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.
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.
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Managing expectations at work after illness or injury is so important to ensure 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. It’s ok to think think 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.
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.)?
And 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.
Most importantly, what do you expect of yourself?
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:
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).
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.
I expect my employer to sort things so I can return to my job like before. There’s not much for me to do.
I have no idea what to expect. My boss has changed and I haven’t even met the new boss yet.
I have no idea what my team members expect of me. I don’t know what I expect from them.
I expect it will take me a few weeks to adjust and then I’ll be fine to work full-time like before.
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.
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.
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.
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.
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.
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.
Pass it forward
Has this blog made you think? Helped you in some way? Share it so it can do the same for someone else.
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