Chronic Illness & Guilt

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“Please, thank you & sorry, are the most frequently used words in my vocabulary”

One of the things that chronic illness is really good at is creating lots of guilt. There is no reason why we should have to feel guilty for an illness that is out of our control; but it’s so easy for those nagging thoughts of ‘being a burden’ or ‘not achieving enough’ to creep in. 

Guilt can make us feel worthless, inadequate, insignificant, and invaluable. 

We may feel guilty for various reasons. We feel we’re a physical burden, we feel we’re a financial burden, guilt for cancelling plans or for needing to take time out, or just because we need to ask for help. 

Please remember, this is not your fault, you have a chronic illness that you didn’t cause and have little control over, you have nothing to feel guilty for. 

Please, Thank You & Sorry

But having said that, I have recently been struggling with guilt, and with thoughts of being a burden. My husband works very long hours, and asking for help when he is already exhausted, fills me with guilt. I was fed up with having to ask for help all the time, and sick of saying sorry multiple times a day, so much so that I tweeted the following:

“All I seem to say all day is; Please, thank you and sorry. Having a #chronicillness like #MECFS is tough sometimes. I rely on others so much, especially my husband and I often feel like I’m letting people down. Does anyone else feel like this?”

My sentiments seemed to resonate with my Twitter followers. It appears these feelings are experienced by many who suffer with a chronic illness. Here are some of the responses to my tweet:

“Every day, but I just do the best I can so I am not too cranky. Also so I can enjoy the heck out of the best days!  Hang in there. Some days are better than others. *hugs*”

“But on those days when when someone loves you anyway and is happy to help it does restore your faith in humanity and love in general.💕”

“Yes I feel guilty for calling on my 75 year old Mum, who has had a stroke, has a heart problem and diabetes for help. Should be the other way around. To top it this week friend made a fb post about lazy people who don’t work and get fatter, if they moved more and got a job….”

“Definitely.  It’s hard when independence has to give way to relying on the kindness of others.”

“My two teenagers are my carers and I’m always feeling guilty asking for things but they never mind. It’s just me feeling awful and continually saying sorry”

“I totally know what you mean. It’s hard when someone you care about is having a tough day but you’re having a tougher day and have to ask for something. It’s hard to feel helpless!”

“I always joke that please, sorry and thank you should be my middle names. The guilt can be horrendous at times”

“Yes! This, so much. A friend once told me to stop saying sorry for things I can’t help but it’s impossible. I need help all the time. It’s a tough adjustment to have to ask so many favours :(“

“Every day x”

“Yes, yes and yes. 😀”

“Every day!! I feel like I am at the mercy of able bodied people. It is a scary feeling”

Where does all this guilt come from?

This got me thinking; where do these intense feelings of guilt come from? I didn’t choose to be ill, and my additional needs are understandable considering my current state of health. I believe ableism is at least partly to blame. 

For a long time, I refused to accept myself as disabled and like much of society, saw disability as an entirely negative thing – I’m not normal, I’m a challenge and a burden. These negative ideas stem from how society assigns inferior value (worth), and limits the potential of persons with disabilities. We, as disabled people, often internalise this deep-rooted ableism within society, even if we don’t realise we are doing it. 

What is Internalised ableism?

I’m sure you have heard of ‘ableism’, it’s a term used frequently within the chronic illness community. Urban dictionary defines ableism as;

“Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.” – Urban Dictionary. 

We are taught by society that our additional needs, or needing to ask for help makes us a burden. Because our needs are different to non-disabled or healthy people, they are labelled ‘special needs’ – are needs not ‘special’, we just want the same access as everyone else. We live in a world that is inaccessible, and cost is always cited as the reason why adaptations are not made – sending a clear message that we are not worthy. 

We are often ignored by the media and have very little fair representation in TV and films. Considering there are 1 billion disabled people in the world today, this is utterly ridiculous to me. When mixed able-bodied and disabled couples are featured in the media, the non-disabled partner is always portrayed as a Saint – “look how he/she selflessly cares for their partner”. “The disabled partner must be so grateful to be loved by someone able-bodied”. These are all examples of ableism, but there are countless more I could mention. 

Ableism is so embedded in society, that even as disabled people we can find ourselves getting caught up in the negativity. Years of absorbing these messages often means that we unknowingly internalise this ableism. We project these beliefs onto ourselves and wrongly judge our lives through this distorted lens.

The fear of being a burden that comes with internalised ableism, including not feeling good enough, and being broken, meant I refused to ask for help for years. This came at great expense of physical health through pushing beyond my limitations. I also deal with the constant feeling that I need to apologise for needing any help, or merely for existing.

So, am I just accepting all the stereotypes society has about disabled people and people living with chronic illness? Am I absorbing the negativity and the shame, and the discrimination that is so inheritantly embedded in society? Yes, I believe at least some of my guilt is caused by internalised ableism.

I am going to discuss ableism, and internalised ableism in more detail in a future post. But I thought it needed to be mentioned here, as often having a reason for our negative feelings of guilt brings us some comfort, and removes self-blame. It’s not your fault – it’s what we are taught from an early age, even if we are not aware of these damaging lessons.

Be kind to yourself 

What can we do to combat these society driven feelings of guilt?

Just by acknowledging these feelings and their possible source can help us combat them.

I know it’s difficult to be so reliant on others when we are used to living such independent lives. But having a chronic illness is nothing to feel guilty about. It is something that can happen to anyone at any time, and it is not your fault. 

Also remind yourself these feelings of being inadequate stem from inherent prejudices within society against the disabled, and those living with chronic illness. Your disability does not detract from your worth. You are just as valuable and deserving as any non-disabled or healthy person.

I have written about practical ways to challenge these raw negative emotions in a previous post, if you would like to read more please click here. 

If you are struggling with feelings of guilt too, rather than beat yourself up, please find ways to be kind to yourself, and practice self-compassion.

When guilt sets in, and you feel like a burden, please remember; 

You are still the same amazing and wonderful person that your partner first fell in love with. You are still the same kind and caring friend. You are still as lovable, worthy, and deserving as you have ever been. Take care x

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

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  3. Jo Moss
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8 Comments

  1. What a great post, Jo. So many people living with chronic illness or disability live with guilt and believe they are a burden. I’ve written a few posts on the subject too. I explained that I had felt like a burden for a while. But nobody was making me feel that way, I was putting the label on myself. I think you’re right, it’s what society tells us we should feel. It’s so wrong. We didn’t choose this life. We all need to learn to be kinder to ourselves. We have more than enough to deal with.

  2. The Guilt of ME

    When the beast descends we know the score
    Strength and hope go through the floor
    We’ve all been on this road before
    Another day of guilt

    Want to take my part in life
    Want to spend some time with wife
    Want to cause no further strife
    Another day of guilt

    Said I’d try and meet with friends
    Missed out last time, so make amends
    Woke up to pain, a common trend
    Another day of guilt

    Everyone else is doing stuff
    I just can’t seem to help enough
    Again I’m feeling just too rough
    Another day of guilt

    Want to plan a day away
    Family time, a bit of play
    Woke with head saying not today
    Another day of guilt

    We may tell others how we feel
    How symptoms bring us all to heel
    We talk of fog, of how it’s real
    We rarely talk of guilt

    We blame ourselves for being ill
    For lives and dreams we can’t fulfil
    How much more will we hurt until
    We start to banish guilt

    Guilt is when you’ve done some wrong
    Not for trying to be strong
    Guilt with us does not belong
    Let’s get rid of all that guilt

    It belongs not with you or I
    But with those sitting up on high
    We need to shout with a mighty cry
    Let them bear the guilt

    It’s with all the powers that be
    Who’ve chosen to ignore M.E.
    It’s been so plain for all to see
    Their hearts should fill with guilt

    So let each of us try to shed
    The guilt, and somehow instead
    Understand we do our best
    When daily we are put to test

    We beat ourselves up all day long
    Same old singer, different song
    So let’s be kind to ourselves, let’s not wilt
    And let us banish all thoughts of guilt…

    By Bill Clayton
    © 23/2/2018

  3. Sometimes we are our own worst enemy. A lot of times those around us are only out there to help, but we believe that we are causing them great inconveniences.
    Others help because they want to. Something that has been in my mind recently is ensuring that others know that you are grateful. Give back what you can, love, conversation, smiles and know that you can help others even when you are struggling with your own troubles.

  4. I recently had to go to hospital (really the only time I’m out)for an intricate test/procedure and both the nurse and sonographer were super but both told me to stop saying”sorry” and “thanks”!It really came home to me when they said that Like most severe sufferers I spend so much time alone I feel I’ve lost some form of “compass”re how to relate to people.PWME have been treated so badly I’m sure it has made us apologetic and thankful for just being treated normally!Anyway great post and another spot on poem from Bill😊

  5. I feel so guilty for being unable to go to work due to my mental health. It’s defeating, and you’re made to feel that you’re just being a freeloader. I have so much guilt held inside me about it, and it’s made all the worse because people think you’re getting better when you’re just putting on weight (I’ve anorexia nervosa).

    I constantly say ‘sorry’ even just for exisiting! It gets exhausting after a while.

    1. I’m sorry you carry all this guilt. I think it can be especially difficult when you live with a mental illness because our society still does not accept that mental illness can be just as debilitating as physical illnesses. I am recovering from anorexia myself so I understand how hard it can be – do you have support?

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