Chronic illness, wellness, and the politics of “identity”

On the phrase "Stop making your chronic illness your whole identity"

You don't have to identify with your chronic illness, they say. In fact, you probably shouldn't. It's holding you back from healing, it might even be the reason you're still unwell. The fact that you talk about your illness is a sign you identify with it too much.

Yet, if you identify with your wellness routine? The supplements you sell, the kind of exercises you do, the smoothies you make each morning, whatever alternative healing modality appeals to you the most? That's just a sign you're dedicated to healing, to being well. It shows you are deserving of good health, unlike people who spend the day resting and taking medications they're prescribed. You talk about it often because you want to attract others who are on the same frequency as you.

If it's not yet clear, I firmly disagree with this logic, yet I see it perpetuated often when I've wandered into “wellness” corners of social media out of curiosity. I'm sure every chronically ill person has heard people say we shouldn't “identify with our illness” or “talk about it too much,” and no matter the logic used, this is generally an ableist tactic to silence us. The most potentially damaging logic I've seen comes from these wellness spaces, and even some toxic chronic illness “recovery” spaces, where people say that we are keeping ourselves sick by “identifying with our illness.” They say we're making ourselves sick with our thoughts and the ways our experience with chronic illness shapes our identity. I'm lucky that I'm at the point where I approach wellness culture with skepticism. I can't imagine what it's like for young or newly chronically ill people who want to be supported, who want to find relief from their symptoms, only to be told that part of the reason they're sick is that they identify as someone with a complex, isolating chronic illness.

I don't believe anyone with a chronic illness sees that as literally the only aspect of their identity, just like people generally don't see just one aspect of our lives as “our whole identity.” Like anyone else, a chronically ill person’s identity is also shaped by their likes and dislikes, their hobbies, their political views, the ways they are privileged (whether they're conscious of this or not), any other marginalization or adversity they experience, social groups they belong to, their goals, and their past experiences. But chronic illness does become a significant factor in our lives. It's not even just the diagnosis itself, or the symptoms - it's also the isolation it leads to, the lack of understanding and support from others, the grief. It's the fact that even though chronic illness is a very human, very ordinary experience, something about it won't quite feel that way. You'll go through phases, sometimes even long ones, where your main concerns are appointments, new treatments, avoiding flares or trying your best to cope with them. Even if others try to understand, it's hard for them to really, truly get it until they're the ones constantly having their blood drawn and trying to avoid triggering a flare. So we talk about it online to help us find others who get it, and then suddenly people act like we're doing something “unhealthy” simply by acknowledging that we live with chronic illnesses.

On some level, everyone knows that nobody's identity is entirely made up of one thing. What they mean when they say “stop making chronic illness your whole identity” is this: “stop talking about your chronic illness, something that significantly impacts your life, so much.” Depending on the person, there could be many different reasons for this. Whether it's because thinking about chronic illness makes them uncomfortable, or they simply don't care about what you're going through, they don't have a right to dictate parts of your identity. Please pay attention to how much more often marginalized people hear this kind of rhetoric when they talk about their identity or the oppression they experience. “Stop making your race your whole identity, stop making your queerness your whole identity, stop making being trans your whole identity, stop making your disability/mental illness/autism/chronic illness your whole identity.” These comments are rarely made to people who aren't marginalized in some way. I think that says everything about the underlying intent behind them.

People tend to look for like-minded people to connect with and social media is one place many of us look. We showcase whatever aspects of our identity that we want others to see when they look at our social media pages. I don't believe there is anything inherently wrong with this. I think it's interesting how often people without chronic illness will make negative comments about chronically ill people “making chronic illness their identity” yet I almost never see people talk about things like hobbies or interests the same way. Chronic illness can consume even more of your life than a hobby because you have no say in how often it impacts you. I can walk away from certain hobbies for as long as I want to, but I can't walk away from my chronic illness. Even more interesting to me is that while living with a chronic illness and talking about it means you are “making illness your whole identity,” spending all of your time “trying to avoid developing a chronic illness” with wellness practices, many of which are not even scientifically proven to help much, is considered admirable, impressive, something to be celebrated and glorified. I can't think of a reason for this that isn't rooted in ableism and healthism. If you live with chronic illness, people want you to stop talking about it, but if you're a “healthy,” able-bodied person trying to avoid developing a chronic illness, you're doing something respectable and worth talking about. It’s also worth mentioning here that people doing something that genuinely protects their health, like taking precautions to protect themselves from airborne viruses, especially when it comes to wearing masks, is completely stigmatized and pathologized. Masks are being banned and anti-maskers call the rest of us “mentally ill” for taking precautions. Many people who talk about wellness rarely wear masks. I believe this is for a few reasons: 1) wellness spaces are rarely ever about improving your overall “well-being” as much as they are about ableism, healthism, and consumerism, 2) these spaces are often very conservative and full of anti-vaccine, anti-science, and anti-mask rhetoric, and 3) people associate mask-wearing with something “vulnerable,” chronically ill people do, and they don't want to wear something that reminds people of a lack of health when they view illness as tied to a moral failing.

A more disturbing aspect of this rhetoric about chronic illness and identity is the pathologization of people who talk about their chronic illness. It's usually implied that by talking about your chronic illness, you're doing something “unhealthy” and it's a sign that you aren't “well-adjusted.” By talking about a topic that is rarely discussed in our society, you're doing something “deviant.” If you talk about the difficult aspects of chronic illness, it's viewed as “complaining” or “negative.” It's viewed as a sign that you identify too much with your struggles and that you don't want to get better. All of this leads to the pathologization of someone presenting chronic illness as a part of their identity. Your identity is regarded as the reason you're still chronically ill and a sign that something is wrong with your mental state.

The only way to make your “health” a part of your identity in a way that is considered truly acceptable in our society is if you identify as “healthy” and you do everything in your “control” to keep it that way (besides taking COVID precautions, of course). The rest of us, those of us who know very little is truly in our control when it comes to health, those of us who know you can do “everything right” and still end up sick, are out of luck.