I’m technically an adult. I’m eighteen now. But never in my life have I felt more like a child, unable to perform the simplest task, unable to fix or help myself. I’ve heard it gets better, but right now it’s not okay, and that’s something to recognize.

Being diagnosed with a chronic illness is hard. Having a chronic illness feels near impossible. I remember when I was starting the process of getting diagnosed and the possibility of it being chronic seemed like a high probability, it took about a month for the realization to settle in. 

During eight grade, my stomach hurt constantly. My legs and hands would turn bright red and purple and swell whenever I stood for too long or was exposed to heat, and they would hurt. Though the doctors couldn’t figure out why my stomach hurt and though the blotchiness too was a mystery, the stomach aches were relatively non bothersome on medication and we ignored the swelling. No further investigation occured. But come last March, I fell ill with COVID for two weeks. This completely turned my world on its unsuspecting head. My chronic illness became evident and unavoidable. 

I’m going to go over the symptoms of my chronic illness, POTS (postural orthostatic tachycardia syndrome), to establish some understanding of what I am facing. I experience stomach aches, a constant fatigue sometimes so deep it feels as though my bones have been hollowed out and replaced with lead, dizziness, neuropathic and very uncomfortable pain when my legs and hands pool with blood, neck pain, brain fog, heat intolerance, exercise intolerance, anxiety, and more. When my hands and feet swell, it’s hard not to stab them to let the pooled blood burst out and relieve the pressure. Very rarely, on good days, I almost forget I am sick. More often, on bad days, I cannot sit up for too long, much less walk around. On the average day, I can maybe walk and stand for five to ten or so minutes before I need to sit down. 

There is no grieving process for a chronic illness, at least not one I can see from where I’m standing. A grieving process implies that you eventually get over it, that the grief and anger go away, and that little by little, you will heal. But the grief and anger don’t go away. They are constant and continuous, provoked by everyday experiences reminding you that you are broken, that you cannot function the way you once did. You can’t get over it because time will not allow you to– you are plagued by reminders that you are built wrong.

Everyday sneers in your face. I am often asked if I have a job. I have to reply no, I am physically unable. I am broken. The other week, my class was talking about going to six flags together. But I am unable to, and this joyous thing incited anger and jealousy and sadness and images of staying home while everyone else has fun: I am broken. Every night during the summer, when the swelling is the worst, brushing my teeth is painful for me, and a simple task is yet another reminder: I am broken. Every time I cry, my hands swell and I am in pain: I am broken. Everytime I stretch in the morning, a wave of dizziness crashes over me and spots cloud my vision: I am broken. Everytime I take a shower I experience a pain so bad that in the moment, I would rather break a bone: I am broken. How am I supposed to get over my disease if every move I make is a reminder that I cannot do what I once did with ease? You are always in the grieving process when you have a chronic illness. There is no moving on, because moving on is not possible. 

I’ve never had a fear of missing out, but rather I have been content to sit on the sidelines. But missing out is starting to get tiresome. You sit on the sidelines a lot when you have a chronic illness. I told my mom it’s like being a bird with a broken wing. You just sit there, completely helpless, while everyone around you flies together and you can only watch. The dilemma is that you don’t want to ask people to stay behind because you don’t want to burden them or deprive them of the experience you are forced to miss out on, but you don’t want to be alone anymore. You don’t want to hear their laughter off in the distance while you are wrapped up in a deafening silence. Sitting alone hurts.  

My family and I went to Hawaii this summer, which I know isn’t something to complain about, but I did miss four days sitting at home alone while everyone else was at the beach. “You should’ve been there,” a couple of them said to me later. They’re right in a sense: I shouldn’t have to stay home. But the use of the word “should’ve” hurt a little bit. Do they not know I would’ve been there if I could? 

There’s a jealousy that comes with chronic illness. There’s a jealousy of everyone who can function the way you can’t, and a jealousy for the younger version of yourself, the non-broken, free version that didn’t know how lucky she was to feel okay and to run. You know, I used to hate running, genuinely abhor it with every fiber of my being– now I would give nearly anything to run again. I almost wish I didn’t remember what life was like before this illness. The memories of being okay tease me, and I am stuck in a constant longing for the body I had before, for the ability to wander the train tracks and hike through the misty woods, to view magnificent art without any pain or fatigue, to walk through an art fair with the same energy and undefinable enthusiasm that made me walk through the whole thing, no matter how big, that I had before. I remember seeing a video a while back of a girl running through wildflowers, and my immediate response was “I wish I could do that.” I long to be running through fields of wildflowers. 

What follows jealousy is an overwhelming anger, the anger that comes from the knowledge that this isn’t fair. It isn’t. I shouldn’t have to deal with pain so bad I would rather break a bone. I shouldn’t have to feel exhausted and sick. I shouldn’t have to dread taking showers. I shouldn’t have to ever deal with terrible pain for hours after five minutes of standing. I shouldn’t have to go into tests with a foggy brain and come out with a poor grade because of my illness, I shouldn’t be deprived of my last few teenage years like this. I am constantly angry, and part of that anger is directed at God. I’ve asked God what his plan is so many times at this point, because I just can’t see it. Part of me doesn’t want there to be a plan, because I don’t want my pain to be a pawn or some cruel way to teach me a lesson. The anger runs deep, and I don’t know how to turn it into art or poetry or music yet. I’m trying to find healthy ways to cope with it. 

I have a breakdown about every other week right now. It’s hard to be okay mentally when you’re rarely okay physically. It’s hard to find the motivation to do anything sometimes. Having a chronic illness is defeating. It’s infantilizing, it’s demeaning, and tows with its looming figure a hefty grief and wistful jealousy and blazing anger. You have to have strength and courage when you have a chronic illness, which I am trying my best to have. I’m clinging onto the hope that it will get better one day, and I am hoping I will find peace in my illness if it doesn’t. This is what a chronic illness feels like: desperately trying to maintain hope when it feels like everything is against you and when pain is abundant.