On Guilt

Warning: contains GIFs

Guilt has been my constant companion throughout the course of my illness. It admonishes me for the things I cannot do, and shames me into believing that I am responsible for my own incapacitation. I am not alone in feeling this way. But just why is guilt such a common feeling among the chronically ill? And why do we spoonies so often feel responsible for that which we cannot control?

I came to reflect on why I experience guilt after a news article appeared on my Facebook feed. It described a formerly fit and healthy woman, who began experiencing alarming symptoms and was quickly rushed to hospital. She was diagnosed with a chronic disease, but after a mere week of being in hospital, was so over it that she up and left. After a biffo with her doctors, she resumed her normal activities, including gruelling overseas aid/mountain hiking trips. Of course she still had her chronic illness – but as she had such a “positive attitude”, she didn’t let it affect her life.

An image of a man and woman on top of a mountain, looking at the sun and clouds in the sky.
At this point, I’m starting to wonder whether the subject of the article exists, or has been cobbled together from the author’s imagination and inspirational photos like this.

I don’t mean to shame this woman, as everyone experiences illness in a different way, and suffering differs as much as the people who experience it. However, the tone this article took was troublesome. Her actual medical treatment was glossed over, with the focus instead on the individual’s achievements despite illness, particularly emphasising that her positive attitude enabled her to live an active life. As the article stated, she didn’t want to sit around “feeling sorry for herself”.

But what happens when you cannot control the outcome of your illness? When despite having a positive attitude, trying your hardest and accepting medical intervention, your illness still dictates every aspect of your life?

Above: a clip from Dennis Potter’s 80s teleseries, The Singing Detective, starring Michael Gambon. If you haven’t seen it before, you’re missing out.

I’ve written about the damage caused by inspiration porn, and how there are ways to be a “good” disabled person. It seems that the media continues to dictate how the lives of chronically ill people “should” be, by only presenting a sanitised version of illness. When the only stories the media seems to cover are “heroes” who bravely battle through their illness, not allowing it to affect their lives, or fallen soldiers who lose their fight, the experiences of those who live every day with debilitating chronic illness are erased.

With the way society treats illness, it is no wonder the chronically ill feel guilty. When illness is presented as a war which you either win or lose, there is no place for those who have to live with their illness for the rest of their lives. This imagery infuses the experience of living with a chronic illness with a certain bodily agency which, in many cases, is absent. The very nature of disease means that the body it inhabits will be restricted in its abilities, and it is foolish to think otherwise.

An image of the book, The Secret, by Rhonda Byrne.
The media’s handbook to chronic illness recovery. Also applies to young people trying to buy a house.

I am ashamed to admit it, but I believed I was responsible for my illness for years, even when I was bedbound and dying. It was only when I read a book that specifically contradicted this thought, exposing it for the dysfunctional thinking that it was, that I realised that I hadn’t done this to myself. 

But why wouldn’t I have those beliefs? For all my life, the media has promoted the idea that we control our bodies, and a mere hiccup like ill health can be turned around with a little magical thinking. Even living with my mother, who has been chronically ill for much of my life, did not prepare me for the reality of chronic illness, for the terrible revelation that nothing I do can change the course of this disease.

Learning this is a journey, not a sudden turnaround. Medical professionals reinforced my dysfunctional thought patterns, by blaming me for my illness, accusing me of being a faker and insisting that I could do anything I want, if I only tried. It is hard to learn to forgive your body when you are met with countless quips from acquaintances who knew someone with your disease, but could still hold down a job, as if the idea of just trying to work had never occurred to me in the past six years, and I was kept helpless by my own desire to stay housebound and dependent.

A GIF from Jurassic Park. Professor Hammond, standing with a group of people, nods, saying there it is. He addresses Malcolm, at the front of the image.

I cried when I read that article, because it presented a view of chronic illness which simply does not exist. If positive thinking and hard work could treat a disease, I would have been cured long ago. As it is, my hard work means very little in the face of a disease which has swallowed up my entire adult life. The implication that those severely debilitated by illness such as myself have chosen to sit around feeling sorry for ourselves is as hurtful as it is untrue.

Spoonies feel guilty about the lack of control they have over their illness, because society tells them to. When unrealistic expectations are a key indicator of depression, it is no wonder that so many struggle with the reality of living with chronic illness. As Jules observed, “it’s not the guilt, it’s the shame”.

An image from The Simpsons. Homer is naked, with a huge stone attached to a collar around his neck. He drags the stone.
Remove the stone of shame! Attach the stone of triumph!

It shouldn’t be this way. We chronically ill folks deserve to have our stories heard, and the media needs to share them. I am encouraged by ventures like The Mighty and Chronically Awesome, which empower the chronically ill and disabled to tell their stories in their own words. ABC Ramp Up was another excellent initiative, before it was defunded. If news stories reflected the reality of living with chronic illness, those affected would learn that their experiences are not their fault or “wrong”.

No one should feel guilty or shamed for being chronically ill. Unlearning these beliefs is hard, but it starts with the truth: your illness is not your fault, and you are enough.

A GIF of two seated women. Women on left speaks, caption reads, and then I'm like, who cares? I'm awesome.
#lifegoals

 

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

11 thoughts on “On Guilt”

  1. I went to see a cardiologist a couple of years ago, for palpitations. My doctor (whom I love) referred me. The cardiologist was in his seventies, in fact he retired weeks after he saw me (saving others from his treatment). He barely did an examination, he just looked me over and said, “Well if you’d lose weight, you’d feel better.” I responded by explaining that I used to exercise a lot, but that with the fibromyalgia, I’d gotten pretty sedentary.

    He – I am not kidding – patted my knee, and said, “Well, a lot of doctors think that fibromyalgia is just an excuse not to exercise.”

    I love what you said here: “With the way society treats illness, it is no wonder the chronically ill feel guilty. When illness is presented as a war which you either win or lose, there is no place for those who have to live with their illness for the rest of their lives.”

    When I got diagnosed, some people said, “Well it’s good it’s not something fatal.” Which is true, I’m grateful for that. But it’s also a lifelong, crippling condition that greatly affects the quality of my life and has changed the entire shape of my future. Why are we expected to cope with that without side effects? Why must everything be either a win or lose? People with chronic illness live in this difficult middle, where we are expected to be grateful we aren’t dead and always graceful in our coping. It’s a shit load to live up to.

    Liked by 1 person

    1. ALL OF THIS. Firstly, that doctor can get his hands off your goddamn knee! And then go fuck himself.

      I’ve had a lot of those “at least it’s not cancer” comments. That sentiment degrades the true suffering of cancer patients, and denies them personhood by making them some kind of illness idol. And it is offensive to those with any other kind of illness. It’s not a competition!

      I think a lot of people just *cannot* fathom the idea of being sick for the rest of your life, so they’d rather pretend it doesn’t happen. Which makes it really hard for those who do have chronic illnesses!

      Liked by 1 person

  2. Siobhan, I think because we look ‘normal’ we are presumed to be ‘normal’ and that’s one reason we feel guilty, we can’t live up to their expectations! I’m sure its been said to you, “well, you look alright, in fact your looking well”! We then start to dohbt ourselves, particularly when one Dr tells you “if you just stopped worrying about yourself so much as really, your becoming a hypochondriac!”. You make a conscious decision to give him a wide berth. The next one tells you how well your doing. You think shes absolutely wonderful. She’s sympathetic, you feel she’s actually listening to you. Your brain fogged mind doesn’t seem to realise no tests are done, no Consultations arranged. Then one day, shortly after a two week spell in Hospital, you have to return to the Surgery, your normal sympathetic Dr isn’t available, you choose another Dr. As usual when trying to explain how you feel, you cry your way through the Consultation. This Dr doesn’t make you feel like a time-waster or give you ‘tea and sympathy’, but asks lots of questions, takes your file home to read, arranges tests and Consultations because she has an idea what may be wrong with you. Has a Receptionist ring if you miss going for bloods. Keeps pressing on until her suspicions are confirmed. This Dr does in months what the others didn’t do in over 5 years, gets a diagnosis and starts you on a Regime to try to help the problem, not cure, as there isn’t one! Mainly, she doesn’t make you feel guilty as others before her have done. A good Dr makes a world of difference and thank goodness for mine. I hate going ti the Surgery. Despite her very heavy work load, she asks you to please call and get bloods done on a regular basis so that she can monitor your health. My Dr makes me feel I am not wasting her time, but trying to help her, help me keep as well as possible. Despite that, others don’t understand chronic autoimmune disease because like mental health its not always visible! How I would love to be like that paragon of a woman who had the powers to literally think herself better! Do I believe that? No, I don’t think she exists, and if she does, then a miracle has occurred and I want one too. Yes, I am being facetious as I think that story is complete rubbish!

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    1. I am very, very glad you have found a doctor who can help you and not belittle you or feed you nonsense. No, mystical thinking doesn’t cure anything. Belle Gibson is a case in point – if it sounds too good to be true, it probably is. I’m just surprised she got away with it for so long. I guess it’s because people wanted to believe.

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  3. I can imagine how tiresome and annoying this must be for you. I always want to punch anyone who talks about cancer being cured by positive thinking or juice cleanses. My Dad died nine years ago, and if terminal cancer could have been fixed by having a good attitude, he’d be the healthiest person alive today. I think a lot of people don’t know how to react to chronic/terminal illnesses and death, so they end up saying stupid shit

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    1. I’m sorry for your loss and the way people talk about cancer. I really didn’t know that cancer conspiracy theories were a thing until a few weeks ago, when they all of a sudden started popping up on my Facebook feed. I am truly, truly shocked that anyone can hold such a view, and at the entire lack of empathy and self-awareness displayed by said conspiracy theorists.

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  4. I have been reading your posts since I “found” you several weeks ago. You sure know how to write a sentence. You are wonderful at expressing yourself and it is a pleasure to read your thoughts. I pretty much feel the same way you do about having enough pain to not be able to do the things I want to do or the things I used to do and can’t do anymore. (If I drop something, it pretty much stays on the floor until someone else picks it up for me…unless I can hook it with my cane and manage to lift whatever I dropped high enough so that I can grab it without having to bend down) (I need to work on sentence structure I see, but I can do that later)….anyway, I know how you feel pretty much, although I do believe you suffer more than I do and you have more to deal with than I do. I have fibromyalgia, arthritis, a heart murmur and other stuff. There are days I can move around and do pretty well, but other days I just plain cannot.
    Keep writing, keep sewing. You have fans!!

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    1. Thank you for your kind words and support, Patricia. It must be very frustrating for you to not be able to perform simple tasks like bending. Sometimes the littlest things are the most challenging. I know I get upset when my parents are out and I cannot perform basic tasks for myself, like moving objects out of my way or bending as you say. Here’s hoping you have more good days than bad in the future x

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    1. I mean clearly, that’s not all. But you truly are awesome, and it sucks ass that this kind of shit guilt and shame is heaped on top of an already fucked illness. So yeah, my original thesis: you are awesome.

      Liked by 1 person

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