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.