There is a specific horror in being young and chronically ill. When you are young you are told your body is indestructible. Your body is at its peak. You’ll never again be at this peak. Youth are painted as the picture of health. So when I was 16 and diagnosed with a chronic autoimmune disease, I was faced with a sort of paradox; at the height of my youth, at the time I was supposed to be my strongest, how could I be weak? What’s more, if my body was supposed to be the epitome of health, how is that my body has already failed me?
It felt like a sort of betrayal.
Chronically Ill and Young
In many ways a lot of people forget that young people can be chronically ill or chronically in pain. A lot of the erasure comes from the paradoxical combination of youth and illness. Often when I tell people that I’m sick I’m met with a lot of disbelief and even invalidation. Comments such as “You don’t look/act sick,” or “You’re young; you’ll be fine!” are common. It is even common for young people who visit doctors to be invalidated, especially young people who suffer from chronic pain. In fact, chronic pain in children is one of the most chronically under diagnosed, untreated and misunderstood medical conditions.
This sort of undermining behavior becomes increasingly dangerous when that invalidation translates into the kind of care the young and sick receive. When guardians, parents and other authority figures uphold these beliefs about youth, they ignore the cries of pain and claims of illness from children. When doctors dismiss and invalidate the feelings of their younger patients, they suffer silently. When culture dictates what bodies are and aren’t allowed to be sick and disabled, we put young people at risk.
These cultural beliefs become even more perilous when internalized by youth. Youth culture has bred a mentality of invincibility and limitlessness and, as a consequence, a shaming of weakness and disability. It is in this culture youth pride themselves in staying up late to cram for exams, dangerously misusing drugs, and pushing their bodies to limits that are unhealthy even for abled-bodied people. Given these realities of youth culture, it becomes incredibly hard for people to come to terms with the realities of the young and the sick.
For me, my walk with being chronically ill has been long and in a state of constant evolution. I have been sick for a very long time. Most of my earlier memories are colored by my illness. As a kid I existed in a space of being very much disabled, very much sick, without words to describe it or understand it. I remember the effects of visual impairments that split my world into two. I remember the frantic worry of my parents, the doctor’s overzealous hands examining my foreign body, confusing surgeries and the sterile isolation found only within the walls of a hospital room. It was there in these moments that I faced a feeling that a lot of chronically ill and disabled people face: that overwhelming feeling that something about my body was inherently, unmistakably wrong.
Finally, when I was 16, I was given words to describe what I was going through. I was diagnosed with Myasthenia Gravis.
When you are young and chronically ill, you face and loathe the sympathetic yet wordless faces of your friends whenever you to try and talk about being chronically ill. You worry about things like medications and side effects and treatment options. During flareups, you watch your body change and shift in unrecognizable, unwelcome, or even in (what sometimes feels like) monstrous ways. You are faced with the possibility that one day, given the right push, your body might fail you completely, and the reality that if that happens there might be very little you can do about it.
How do you love a body that is sick? How can you love a body that is failing you, that is the constant source of fatigue, complications or pain? Radical self-love becomes hard when you feel like you don’t have much of a body to love.
I’m lucky enough not to experience the chronic pain that a lot of people with chronic illness experience, to function without daily medications and to experience strong symptomatic flareups pretty inconsistently. In the ways that I am unlucky, however, I’ve learned to cope, adapt and advocate the best I can. I am forced to remember my limits, that my body in some ways is a sort of time bomb. Given the right trigger — or no trigger at all — my quality of life could be drastically changed, even fatally.
It is at these moments when it feels like my body is falling apart, when I am faced with these realities, when I find it the hardest to love and accept my body at the place where it’s at, that I try and love it the most.
Caring For My Chronically Ill Body
When your body keeps you in and you watch your friends going out, partying and trying new things, take a moment to love your body and practice self-care. Watch a movie and get lost in a different world. Remember your worth and that you deserve to be in the world. Do what you can for your body and your mind to make yourself feel better. When you find your mind wander to the darker truths that accompany the reality of being ill, try and remember to stay mentally resilient.
Reach out to people who love and support you. Journal about your feelings. Cry if you need to. Love your body enough to be able to accept it for what it is at this moment rather than what it’s not or the fear of what it may become.
Most of all, it’s important to understand that it is okay to not be okay. It is okay to be tired, or in pain or scared or to feel broken. It is okay to feel because it lets you know that you’re still here.
For the chronically ill and the young and the sick: maybe we won’t be okay. Maybe we will live out the rest of our lives sick, tired, struggling to function, but adapting. Maybe there will be no cure. Maybe we’ll have an episode so severe that it will end us. These are our realities. But today we are here, we are existing, we are alive and being and trying — always trying. And maybe for today, maybe for now, that’s enough.
[Feature Image: A photo close-up of a young person with brown skin and black hair from the shoulders up. They have their head tilted to the side and are looking into the camera with a sad expression on their face. Their chin is resting on their hand.]