Why We Need to Stop Romanticizing Illness

Don't become a spoonie if you want to get better.

Das Kranke Kind (The Sick Child), 1918 by Lovis Corinth

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If you’re curious about the public reaction to this essay, check out Hot Take Think Tank episode one.

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When I was 22 years old, I became chronically ill, and I’ve been varying levels of sick ever since. At 33, I’ve climbed my way back to a reasonable simulacrum of healthy. I still take as many medications as your grandmother and spend most of my time at home, but I am up and about during the day, able to take care of myself and my pets and complete the various tasks that need doing. I can even exercise now, which took three years of rehabilitation. Compared to when I spent most of my day sleeping, and found showering and food preparation painful and exhausting, I’m doing great. And giving up my spoonie identity played a significant role in my recovery.

Let’s back up. At 22, my wrists began tingling. I went to the doctor and then flaked out on the physio she suggested, figuring things would go away on their own. Instead, within a couple of years, the pain had spread up my arms, into my shoulders and neck, down my back, then into every joint and limb in my body. Eventually it became excruciating to use my hands, sit, stand, or walk for any significant length of time. I had to quit school, and working was out of the question. I finally found a doctor who could offer me a diagnosis, but my hope evaporated when I found out that treatment options were limited and the long term prognosis was poor. Over the years, I heard some variation of this again and again from various medical professionals: no cure, few effective treatments, unresponsive, et cetera. Thankfully this condition wasn’t going to kill me or shorten my life, so things could’ve been much worse. But I was more or less told by my medical team that I could expect a lifetime of pain and suffering. I was devastated.

During this time my life had gotten smaller and smaller, in the physical sense (I rarely left the house to go somewhere other than the doctor), but also in regards to my hopes for the future. It was hard to imagine what my life would look like in ten or twenty years. And so, like so many others, I turned to the online world in search of understanding and connection.

Sure enough, I found pockets of young people just like myself: those who were too disabled to participate fully in society. Some of them were creating a strange kind of glamour or mystique around their illnesses, posting photos of bejewelled canes and showing off how many pill bottles were on their night stand. It was a world where the sicker you were, and the more poetically you could describe your suffering, the more attention you would get. A lot of the posts centered around being tragically misunderstood: how the person’s suffering was so unique, their misery so specific, that no one really understood them. Everything people said to them, even if it was meant to be comforting or uplifting, was just further proof of this profound void between the spoonie and the world around them.

I related to a lot of this. It also fit into the rigid identitarian worldview I had at the time, which implicitly encouraged me to find ways to label myself as oppressed, since the more oppressed I was, the more clout I had within my subculture.

There was something noble about suffering, something that made me better than other people. And as a 22-year-old trapped in a body that was betraying me, I was going to take power where I could find it.

Being part of the spoonie community increased the hostility I felt for the able-bodied world. To be clear, there are massive improvements needed to make the built and natural worlds more accessible to more people, and I support those efforts. Disabled people who are unable to work often face devastating poverty—I co-organized a campaign to advocate raising disability and social assistance rates. Fighting material inequality is a worthy cause.

Truthfully though, a lot of the hostility I was expressing wasn’t aimed at government neglect or inadequate bylaws. It was directed at the people who cared about me most and were trying their best to understand what I was going through. The “us vs them” mentality was strong, and during this time it was as easy to offend me as asking me if I was feeling any better (because the nature of chronic illness is that it is permanent, so how dare you undermine my experience).

As you can imagine, I was not particularly fun to be around during this time, and so my social life took a major hit. Rather than wondering if I’d become more self-absorbed, defensive, or dismissive of other people’s needs and desires, I chalked it up to ableism on the part of my former friends.

Now, here’s the thing: I believe that illness does make one selfish and that there’s a utility to this. It often takes prolonged effort to attain a diagnosis for a chronic condition, which includes monitoring and recording symptoms very closely. Chronic illness is the body asking for attention, and it’s in our best interests to provide it. It can be hard to return from that period of introspection, however, especially if the symptoms never go away. But it’s also necessary, if one values mutually beneficial relationships.

One significant detail that many outside writers have missed is that spoonie culture has significant benefits for its members that go beyond validation and understanding. I was in a local spoonie group for many years, and I saw people buy each other groceries, deliver medical supplies, recommend specialists, and much more. It’s not just sick people complaining to one another; it was, in my experience, a real community in the sense of the material and physical support people were providing to one another, usually for free.

That being said, there was a topic that was taboo in these types of spaces: getting better. Many people such as myself had been given poor prognoses by their doctors. But it wasn’t just that they knew there was no cure for their conditions—many people didn’t think they could get better at all and took offence to anything that could be interpreted as contradicting that.

This is where the difference between having an illness and identifying with that illness comes into play. If you have an illness and you hear someone talking about how they recovered from it, or at least drastically improved their quality of life, chances are you’d want to hear about it (so long as they weren’t selling some seedy-looking course or supplement). But if you are that illness and someone else suggests it might be possible to lessen is effects, or to have a life that’s not consumed by it, you may react as though your very humanity is being questioned, your reality trivialized. And that’s the type of response I’ve seen in these groups to posts and comments about getting better.

I can sympathize with just how powerless chronically ill people feel. The research for many chronic conditions is terribly underfunded and the idea of an actual capital-C cure feels entirely out of reach. The inability of medical professionals to provide relief only compounds this helpless feeling. But staying mired in that feeling, and ignoring whatever amount of agency one does have, is a recipe for misery. Lifestyle changes, mental hygiene and healthy relationships can make a big difference for nearly everyone, and it’s not ableist to say so.

When I decided that, regardless of my poor prognosis, I was going to see if I could get better, the spoonie label no longer fit me. As I started to eat differently, to exercise, to improve my sleep hygiene, and to obsess less over my symptoms, I felt a distance grow between me and the noble sufferer I was in those groups. As I re-established hobbies, mended neglected friendships, and took a renewed interest in the world outside of myself, illness became less and less central to my sense of self.

I no longer consider chronic illness an identity. Doing so risks no longer treating it as a disease, something deserving of a cure, something whose devastation needs to be minimized. I once believed that being chronically ill meant I’d be mired in misery for the rest of my days. Thankfully, I closed that tab and moved on with my life.