Feeling guilty when you have a chronic illness is inevitable. You’re more tired and forgetful now. And your body has limits that it didn’t have before. Overcoming these feelings is hard when it feels like you’re letting yourself, and everyone around you, down.
I’ve written this article because you need to know that you don’t deserve to feel so guilty. You are not to blame for your illness. It took me more than five years to learn this – and I don’t want you to waste as much time as I did.
There are ways to overcome these deep feelings of guilt and shame – and it’s time for you to start.
As a society, we are subconsciously very critical of those “less able”. We compete with each other (and ourselves) all the time. We want to be better, faster, stronger, and more capable.
So one of the biggest reasons we feel guilty after a chronic illness diagnosis is because we’re struggling to accept that we are now “less able” in certain ways. We develop such hateful feelings towards the term disabled.
We let it have so much power over our emotions. And for what reason? Because we have some limits?
For the amount of energy we put into feeling guilty and ashamed of what we can’t do – we are giving ourselves less determination to explore all the new things we could do.
Some limits don’t mean we don’t deserve to be on this earth. That we don’t deserve to be happy. And it sure as hell doesn’t mean we’re incapable flourishing in life. It just means you need to relook at how you plan on reaching your own satisfaction or success.
Energy is such a scarce commodity for us – guilt isn’t worth this amount of attention.
Before you get into the points – I recommend taking 5 minutes to write down a list of all the things that are making you feel guilty right now. It’ll give you a better sense of exactly how this article can help you. Now, it’s time to relax. Open your mind. And let go of this perpetual and unnecessary self-punishment.
When You Need to Cancel or Change Plans
One of the biggest difficulties of having a chronic illness is that your health is erratic and unpredictable. You could feel well one day and like hell the next day. This is normal.
In fact, this issue has made you hesitant to commit to plans in advance. And it’s made you follow through on commitments that you weren’t well enough to do in the first place.
Because the stigma behind declining or cancelling was a bit too much to bear. If you’re not well enough to follow through with an invite – then you’re not well enough. That’s it! You have a responsibility to your health, and that must be your number one priority.
Your good friends and family need to understand that you’re doing the best that you can.
If it helps, ask them to attend a doctor’s appointment with you, so that they can hear exactly what the doctor has to say about rest, recuperation and downtime.
And when you need to cancel an event in the future – just say that you’re sorry you have to miss it.
It takes a lot of courage but learning to say no goes a long way. Any good friend or family member should understand your last-minute change of plans. And as a friendly compromise – set a new date to meet up instead of apologising for the fact that you couldn’t make this one.
When You Depend on Others and Feel Like a ‘Burden’
Depending on others sounds luxurious – but it’s not. Anyone with a chronic illness will know it feels like your dignity and independence is being taken away from you.
It’s not fun to have someone drive you around when you can’t.
It can feel embarrassing when you ask for help up the stairs.
It feels even worse when you have to have someone else bath you.
The biggest difficulty with this guilt is that it eats you up and leave you feeling even more exhausted.
The irony is, however, that you are the only one who feels guilty about the fact that you need help with some daily tasks.
No one else (that actually cares about you) minds helping you out. In fact, they want to help you and make your life easier. Next time you feel guilty when you ask for help with a daily task, remember that:
- Others want to help you. It’s hard enough for your loved ones to know that there is no way to fix you. So they want to be by your side in every way possible.
- You do make positive contributions to your family, friends’ and partners’ lives. Yes, you may be asking for help more often now, but don’t disregard that you help your loved ones too.
- Whether it’s your time, patience, love, advice or even professional expertise – YOU help them too. Your life has huge value.
- You should feel comfortable asking for reassurance from family, friends and partners. We all have moments of doubt or insecurity about how our loved ones feel about helping us.
- And rather than letting these thoughts eat you alive – just ask them. These conversations are so useful in the long run because they help strengthen the trust you share.
When You Have Food Restrictions
This can be such an awkward issue to stumble across. Trust me – I know! I have tried various lifestyle changes to see what could help alleviate my symptoms. And diet played quite an important role.
If you are sugar-free, dairy-free, meat-free, grain-free, vegan, etc. You know that it’s that much harder to order food when you’re out. And it’s even harder to turn away food when you’re eating at someone else’s house.
But you need to think of it this way: Your job is to put your health first so that you can lead a functional life. If you don’t put your health first, it won’t only affect you – it affects everyone.
If you’re eating at a:
I suggest checking out the menu before you decide to go. This way you have an idea about what you can eat there.
Alternatively, ask your friends or family if you can go to a place that you know is safe for you to eat from. Most people don’t mind you choosing the restaurant if it means that you’re able to join them.
- Someone else’s house
I suggest letting them know all your dietary requirements in advance – if it’s possible.
If you can’t do this, and you don’t know what to expect, try and eat a small meal before you go. That way you don’t starve. Just be sure to reassure your host that you are not trying to be difficult, it’s just a necessary rule you have to follow for the sake of your wellbeing.
When You Can't Do Household Chores
This is similar to the guilt you feel about being dependant on others. But in this case, the guilt is more around your contribution. Household chores are normal tasks we have to do, every day, to ensure a household runs smoothly.
You take on these responsibilities for the wellbeing of everyone under that roof – not just yourself. So the guilt you feel is more about the fact that you are letting others down because you’re not able to fulfil your duties very well (or at all) anymore.
Here’s the thing – there are many ways that you can help your family that don’t involve the same household chores you used to. But it’s necessary to sit down with everyone and discuss exactly how you think your roles should change.
If physical tasks drain you – then it’s time to swap them out for less hands-on work. And if you’re too unwell to help at all, then it’s time to consider the financial viability of using a household cleaning service. Even if it’s once a week, it’s worth it.
When Your Illness Affects Your Partner
Whether you’re married or not – a chronic illness will affect the relationship you have with your partner in so many ways. Especially because there are certain duties that you are expected to fulfil within the partnership.
And now, it feels tougher than ever to get them right. But, if anything, you should still feel stronger as a pair than you do on your own. And a chronic illness needs to be handled the same way you handle any other obstacle that you’ve faced in the past – as a united team.
- Your partner wants the best for you and wants to see you be well.
- They don’t know what they can do to help you – you have to show them.
- You need to take the time to reassure each other that you’re on the same page when it comes to your commitment and happiness.
- You need to be as open as possible about how you’re feeling and where your limits lie if you’re going to take on each day.
- They just want to see you be well, so prove to them that your fighting spirit is strong.
- You’re allowed to break down and cry. If you can’t be vulnerable with someone you love, then who can you be vulnerable with?
- You need to talk about the things you feel guilty about. Be open. This way you can see how your partner feels about helping you.
- You have not chosen this life. You do not deserve to feel guilty about what has happened – and neither should your partner.
If you're struggling with relationships right now – I know how you feel. Here's a read that's worthwhile checking out if you're looking for ways to confront your chronic illness and use it to strengthen your relationship: How to Date When You Have a Chronic Illness
When You Can't Keep Up With Your Kids
Most people struggle to keep up with their kids – never mind anyone with a disabling chronic illness!
This is a tricky situation because you’d like to be as present and as available as possible for your kids. But your body may have physical limits that just make it so difficult. Try to remember it’s more about the quality of time you spend with them as opposed to the quantity of time.
When you do have more energy, make sure to be as engaging as possible. And when you are tired, try and explain that your body is tired and that you need to rest.
If your kids are still quite young, then you may even find yourself with a few cuddly-bears in your bed while you’re resting. You don’t need to be active together to engage.
Sometimes reading a story or listening to an audiobook together is more than enough. And when it comes to the daily errands, try to do things in such a way that it makes your life easier.
Using a carpool system for school.
Keeping your kids busy with after school activities throughout the afternoon.
- Organising their meals in advance so that you don’t have to stress every night.
Finally, see if it’s worth your while to get some extra help if it’s financially feasible.
When You Can't Work and Contribute Financially
Unfortunately, work can take a big toll if you suffer from a chronic illness. The more unreliable your health patterns are, the harder it can be to hold down a job.
You may find yourself calling in sick to work than anything else. If this is the case, then it’s time to re-evaluate your work-life.
If working isn’t an option, like it isn’t for me, then you’ll have to see how you can best adapt it to suit your new lifestyle.
I wrote a piece on The Best Jobs for People with a Chronic Illness that will give you all the insight you need.
- Remember that your new limits only mean things need to change – they don’t necessarily have to get any worse or any better.
- If your family doesn’t depend on your salary – then maybe you should consider cutting back on how much work you take on.
- While I definitely recommend keeping busy and having a purpose, I don’t think you should work at the expense of your well being unless it’s really necessary.
- Try and realise that there are other ways that you can contribute to your family’s life in ways that aren’t financial. Whether it’s with your time or help – your family need you in different ways.
When You Feel Like You’re Not Living Up to Your Potential
The next three areas of life you may have feelings of guilt towards are a little trickier to work on because they require your time, patience and validation to work through. Undoubtedly, you’ll have strong feelings towards each one – so listen closely.
If you feel as though you aren’t living up to your full potential, you need to take a step back and ask yourself exactly what you believe your full potential to be? Have you taken into consideration your new life and your new responsibilities to your health?
If you haven’t, then it’s understandable why you feel disheartened. Remember that each goal you set for yourself needs to be realistic. And when life throws new obstacles your way – so do you need to adapt. You need to think about your goals and ask yourself:
Is this goal still practical to achieve?
- If it is, how do I need to adapt my approach so that I can achieve it?
- If it’s not, then where should I reposition the goal post?
Never stop pushing yourself in life. But remember to be kind and reasonable too.
Remember that you need to focus on your priorities and re-evaluate them regularly. Think about how much time and effort something is taking you and ask yourself:
Is this worth my time?
Is my success worth the trouble?
One of the biggest motivation killers is when you set yourself unrealistic goals. “Everybody is a genius. But if you judge a fish on its ability to climb a tree, it will live its whole life believing that it is stupid.” Albert Einstein
One way that I love to re-align my thoughts and boost morale is through practical affirmations. You should definitely check them out if you also like to be motivated in a realistic and forward-thinking way: 100 Affirmations for Chronic Illness That Really Work (with free printables)
When You Feel Like You’re Not Contributing to Society
It’s one thing to believe in yourself – but that’s not going to be enough. You are fighting a chronic illness that most people in the world will never understand. They have never had to endure something similar.
Unfortunately, people often judge what they do not understand. So it’s something to be careful of in the future. You may find yourself being interrogated with questions like:
“But my wife broke her hip and she was able to look after the kids just fine. What’s wrong with you?”
“I had such a bad flu last week but I still made the board meeting. Why weren’t you there?”
“We’re all tired, but we’re all staying because we have to. Why are you so special that you’re allowed to leave?”
Honestly, there are so many societal subcultures putting pressure on each one of us to perform in certain ways. And here’s what you need to remind yourself:
You need to be extremely proud of yourself. You have accomplished a lot more than most could in your position. So when you get asked condescending questions like these – ask yourself if it’s worth your time and energy to fight back?
- Rules are meant to be broken here. Your life has changed – so the rules about how you should lead it have changed too. Be proud of making that leap against societal norms, it shows your strength.
- Approach these situations in the same way you would tell your best friend too. If they were in your shoes – would you judge them or tell them to walk with pride because of their strength?
When You Feel “Survivor’s Guilt” for Living With a Chronic Illness
Let’s get a few things straight:
You deserve life.
You deserve happiness.
And you deserve to be here on this earth.
Or else, why would you have been given the opportunity of life?
Here’s a little mantra that you can print and stick to your mirror:
We live in the year 2020 guys.
We are learning just how much mental health affects us physically. And we can no longer take our mental health for granted.
One step at a time, we need to overcome the mental health effects of chronic illnesses and prove that they can be managed.
If you have any other awesome techniques for coping with guilt – I would love to hear them. Look forward to hearing from you!