Chronic Illness & Guilt

“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

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