The Superhero Side of Chronic Illness

Super Sick: Making Peace with Chronic Illness, by Allison Alexander

These problems may be manageable for a short time. But when they keep happening, when there’s no bright horizon of “getting better” to look forward to, I feel like I’m a cup continually poured out and never refilled.

Being sick for a long time or even forever doesn’t make the best story. We know that. What’s not as well known is the toll that popular culture’s beloved narrative of conquering illness takes on the chronically ill. How does it feel to only see the defeat of illness celebrated, to see those stories told over and over, but scant representation of the strength it takes to live, day after day, with illnesses that likely will never be cured?

It feels pretty terrible, author Allison Alexander, who’s suffered with irritable bowel syndrome since childhood, is here to tell you. In Super Sick, a memoir and gentle guide for understanding and coping, she does it in a way that is warm and accessible, providing a window into what living with chronic illness is like. She draws on her love of fantasy stories, video games, and superhero narratives to show how precious few characters exist that are sick or disabled without the possibility for regaining health, and yet are unapologetic about this state and go about their lives coping and living with illness as “normally” as possible.

A quote she shares from Leanne Skarratt’s blog Soul Over Sickness really resonated: “Society has a pretty narrow bandwidth when it comes to illness; either you recover or die. I think the concept of chronic, enduring conditions is still slightly outside the realm of public consciousness.”

Even as someone with chronic health problems which aren’t lethal, just significantly impede enjoyment of life and peace of mind — so, all too familiar with the dearth of characters in similar positions — I hadn’t noticed how sparse this representative field was in pop culture. I knew that what we love is to see the conquering of villainous disease, the triumph over our bodies’ invader or weaknesses. And if you haven’t won that battle, you shouldn’t be telling the story and bumming everyone else out — that’s the message we get.

But Alexander highlights how damaging this truly is, and then she picks out the stories that do show people with chronic illnesses being heroes, either by pushing on to live their best lives despite sickness or not letting themselves be defined by it, and emphasizing other empowering, inspiring messages that are deeply meaningful for those who see something of themselves in such stories.

Forget becoming a hero, sometimes we’re just trying not to become a villain.

As soothing and helpful as this is for anyone suffering chronic illness, it’s also helpful for their loved ones, because Alexander captures so well the complexity of how it feels — the frustration, hopelessness, emotional ups and downs, and the guilt. I was thrilled to see this addressed, because it’s such an uncomfortable, sad, touchy element of long-term illnesses. Even partners who truly get it and love you anyway will be tested — that’s just how these things work. They’re hard and frustrating and ugly and can bring out the worst sides of a sufferer or carer as much as they bring out the best.

Her breakdown of why people telling you it could be worse was incredibly helpful too, mainly for those who are inclined to remind a non-terminal patient of this:

I’m not alone in my suffering. However, I’ve learned not to dismiss my own pain by telling myself “someone else has it worse, so I should be thankful my pain isn’t as bad.” This is unhelpful because it just adds guilt to my already tumultuous emotions. Weighing my suffering against others’ is a pointless exercise. Sure, someone else may have it “worse,” but what does that even mean? What’s the scale we’re using for measuring suffering, and if mine weighs less than the next person’s, does that mean I don’t have a right to feel frustrated or sad?

She also covered how friendships are affected, as friends may not realize the severity or frustrations of the sickness and think you’re malingering, exaggerating, making excuses. Near the beginning of my own illness, I had a friend tell me angrily that I just must not be listening to the doctors if I was still experiencing symptoms. I can’t emphasize enough how painful such a reaction is, and yet I understand — as frustrating as it is to live with this stuff, it’s also frustrating to have to hear about it without ever reaching that satisfying resolution of “beating” an illness.

Or, worse (IMHO), are the people who think you can manifest your way right out this — duh, why haven’t you done that already! Or maybe you’re not praying the right way to find the hidden sin causing your illness, have you considered that?

A friend sent a string of text messages […] saying she’d had the exact same health problems I was experiencing, but she’d found the spiritual root of her unhealthiness and was now free of her symptoms. She was praying for healing and freedom like that for me, that I would find the root of whatever sin was causing my sickness. She texted me again the next day to see if her prayers had cured me.

Anyone who’s been sick has heard some iteration of this, and although I think these people mean well by encouraging you to lean on prayer and spirituality, I find it endlessly frustrating. Yes, that’s because I’m an atheist, and I do know that other people draw comfort and hope from religion. But its flip side is being used against you like a weapon. You’re being punished, you don’t have faith — the ways religion can be weaponized if you’re not lucky enough to be “blessed” goes on and on. There are Christian and spiritual elements explored here, so this will be more meaningful and helpful to those who think similarly.

The same goes for the pop culture references made — as much as I appreciated the concept, most of these were completely lost on me (aside from Harry Potter, and I did love the inclusion of The Bone Collector, my favorite 90s thriller!) and I mostly skimmed the stories told from books, movies, games, and shows because fantasy is not my thing, even when incorporating this topic of life lesson takeaways and chronic illness representation. I think some familiarity is necessary to fully appreciate this. But for anyone who knows her references, I can’t imagine how resonant this would be. It includes a wealth of recommendations and resources, both to distract and uplift during darker periods and to find support and stories.

I found the memoir portions the most meaningful, and really the strongest, because Alexander is so adept at capturing how illness feels, its worries and paradoxes and unexpected complications and infringements on what others consider a normal life. She addresses the stress of doctors’ visits, particularly with illnesses that don’t have clear solutions. Doctors are often as baffled as patients, leading to an exhausting cycle of guesswork, side effects, worry, and disappointment.

So Alexander doesn’t shy from the difficulties of being sick with no end in sight, but it’s hopeful. She shows how she’s managed to find people to support her and how much their love means. At the same time, I appreciated the frank acknowledgment of how tough this all is. This line especially hit me: “I have no idea where I would be now or what my personality would be like if I didn’t struggle with a chronic illness.”

It means a lot to see such thoughts put into words. This will be greatly helpful to chronic illness sufferers, especially those with similar pop culture interests.

Second edition published May 21, 2021 by Phoenix Quill Press. I received an advance copy courtesy of author and publisher for unbiased review.

12 thoughts on “The Superhero Side of Chronic Illness

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  1. It’s cruel that we so often blame the sufferer for their illness – you’re not praying right, eating right, exercising right, etc. I wonder if it’s because seeing chronic illness in others makes us afraid. It threatens our belief that we’re in control of our lives. So we try to fix the problem or find an explanation that restores our illusion. Thanks for this thoughtful review.

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    1. I agree, it’s very cruel and yet happens too often for it to just be a quirk of a mean person or unpleasant personality. I think you make a really good point, there must be some tendency to assume the person’s done something to bring it upon themselves so they can feel like they’ll be righteous or disciplined enough to dodge any similar bullets. The things people do and believe to try to feel in control…it astounds me. Thanks for your thoughts!!

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  2. As a chronic illness sufferer, I think this should be a book I read. As I navigate (yet again) dealing with doctors who are baffled and are telling me “You are too young for that problem” or “You can’t have that” when turns out I do have the weird problems, I am getting overwhelmed at how lost I feel. I just had a doctor say “You’re not special” as an answer to brush away my concern. Turns out that I am sadly “special” for many of the things I have now. Wish I was as normal as everyone else my age who doesn’t seem to worry about these things. I guess what I am trying to say is that this book may have come at the perfect timing for me. Thanks for sharing.
    x The Captain

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    1. I am SO sorry to hear you’re going through that again, and with doctors who sound less than sympathetic and unhelpful, to put it mildly. Keep trying to advocate for yourself, research in any medical journals and articles you can find with reputable sources, and document as much as you can to present them with.

      Also that “You’re not special” comment gave me a sick feeling, I’ve heard similar, just not in those exact, incredibly insensitive words when I swore something wasn’t right, which turned out to be true (I think mine was something like “You’re not going to be the exception.” Why are there so many doctors like this?!) Ugh, I am just so sorry for what you’re going through. As if being chronically ill isn’t inherently shitty enough, you have to endure bad treatment and people not believing in what you’re experiencing.

      This book is very comforting and reassuring that you’re not alone in what can be such an isolating experience. I would also point you to The Lady’s Handbook for Her Mysterious Illness by Sarah Ramey and Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery. Both have helped me massively in navigating this, although it’s still really difficult in so many ways. Sending you a virtual hug – I’m always hear to listen if you need to vent!!!

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  3. Oh gosh, that stuff about how some Christians (and people of other faiths) interact with people who are chronically ill makes me so sad. One of my friends (also a Christian) was in a wheelchair for years, and still sometimes needs one, though she’s not chairbound any more. The stories she’s told me about strangers on the street approaching her to pray for her or castigate her for her sin or whatever make my skin crawl. I do pray for people and do believe that miracles happen, but I hate the way that blame gets put on the person with chronic illness or disability – and I do also know it’s plain good manners to wait until someone actually asks you to pray for them!

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    1. It’s such a sadly common line of thought — that anyone hurt or sick must have deserved it somehow and now has an opportunity to repent, I suppose. I can’t even fathom the audacity it would take to approach a stranger in a wheelchair and say something like that…I thought I’d heard it all, but wow. That really is a new level.

      Your manners around prayer sound so different than how Americans do it — they pray for you whether you like it or not and make sure to constantly tell you they’re doing it for you so you’ll appreciate the favor!

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  4. This sounds a welcome addition to books about mental and physical health. It’s so tempting to try to help people with what you know, whether that’s prayer or looking things up they might not want looked up (that’s my one!) but we all have a duty to have the manners to wait to be asked, indeed, as louloureads says, above!

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    1. Haha you and me both — I always think surely we can research an answer for anything! I think accounts like hers are really helpful for people who may not understand that what they’re doing is incredibly hurtful instead of helpful. She explains so well what it feels like to be on the receiving end of this kind of “advice”.

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  5. One of my daughters has lived with chronic illness for her entire life. I don’t know if she’s ever really come to terms with it. When I mentioned this to a therapist, she said that could well be the case because my daughter is still young (18) and she doesn’t think of her illness in the same way that healthy people do. At some point, however, this seems like an important read for both of us.

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    1. Oh wow, I’m so sorry to hear that’s the case for her. It does make sense, that she would view it differently when it’s been an ever-present part of her life. This book was interesting because it’s the first I read where the author also had her illness since childhood, instead of developing it as a teen or adult. So it’s very interesting from that perspective. I think this one could definitely be a helpful read for you two.

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