I believe that owning your story can be hard, but that running from or trying to hide from it is even harder. I have what are considered chronic, invisible illnesses. Typically, if you were to meet me and shake my hand, you wouldn’t be able to tell. But they aren’t going to go away with time, they can’t be cured, and they aren’t going to go into remission. All I can do is manage them to the best of my ability. They are rare, so by extension, so too am I: I’m rare, I’m unique. There is a lot that I am not and will not be able to do, but I try my hardest to make the most of what I can. Every day, I am learning to live with my “new normal,” which often changes by the half hour.
At my past two schools, I’ve been the “sick girl.” It’s been all that people see me as: “Ainslie, the Sick Girl.” They aren’t able to see past it - to me, to Ainslie the person. One day in middle school, I was walking into my class late, by just a minute. I heard the girl I sat next to ask the rest of my table, “where’s Ainslie?” Another person responded, “who’s Ainslie?” This response didn’t bother me much, it was a fairly big school, but the one that followed hurt. A third person at the table replied, “you know, the girl who sits here, the girl who’s always sick or injured?”
But I don’t want to be just the girl who’s always sick.
I’m not just the girl who’s always sick. It’s true: my illness is a part of me, but it does not define who I am. In yearbooks, numerous people have written things like, “I don’t know you all that well, but you seem nice and you’re always injured.”
Are these people really incapable of thinking of anything else they’ve noticed about me in the past year that we’ve been in the same class for an hour a day? When I’m sixty years old looking through my yearbooks, I don’t think that’s something I want to be reminded of. I’m not just the “sick girl.”
I believe it’s hard to own your story. Strangers in public, everywhere I go, feel the need to ask questions at times when my illnesses aren’t so invisible. I truly believe these questions aren’t meant to be as rude as they sound in the moment, since they usually stem from being uneducated. I’m still getting used to remaining calm when they’re asked, even though I’ve been hearing them for years.
After making it this far, hopefully you’ll be able to see what could be taken as offensive in some of these statements. My favorite question - mostly from other kids: t“You’re not contagious, are you?” This one makes me laugh and has to be answered with some sarcasm, “Yes, I actually am contagious. You might want to back up, you can catch my genetic condition if I sneeze on you.” Then, you wait for the face they make, which is pretty entertaining. Another common question: “What is wrong with you?” The question itself isn’t so bad, although it could definitely be stated in a nicer way. The tone that’s used by complete strangers is what gets to me. They say it in such a disbelieving, scornful, or critical way. I have had a few people ask this in a caring or sympathetic tone, but the ratio is not even close. Oh, and this one really, truly infuriates me: “Are you pushing yourself hard enough?” Thank you so much for asking, but last time I checked, I’m typically the best judge of that. I’m pretty darn proud of myself for the fact that I’m living and functioning - at any level - with my illness. I will not let anyone take that away from me. Not only do I have to own my story with the people around me, but also with strangers. And I believe that it is grueling.
When my illnesses are invisible, and I choose to tell people, I get some startling and appalling reactions. Just as I have to make deliberate efforts to manage myself physically, I also have to train my mind to respond politely to cringe-worthy comments. Of course, there are many who are compassionate, but the numbers aren’t what they should be.
Here are some of the statements I get: “You don’t look sick to me.” How am I supposed to react to that? Looks can be deceiving; you know what they say about assuming. And “If I were you, I’d be milkin’ it much more than you are.” Oh buddy, your ignorance is actually kind of hilarious, but also extremely irritating. If you were in my position, you’d just want to get on with it and live your life to the fullest. You definitely would not want to be here explaining it to me, who couldn’t possibly understand.
Please do not give me your advice on how to deal with my illness. I do not need you to tell me to exercise more often, or to take Tylenol or Advil, or to try herbal remedies or different diets, or to tell me to ignore it, or to tell me that it could be worse, or to compare me to someone else.
I promise you that I’m doing everything that I can to feel the best I possibly can. I hate missing school or cancelling plans. I hate complaining or whining, I’m sick of being sick. I most definitely don’t want to be pitied, I want your understanding, your friendship and support. Some people want to be skinnier, to be prettier, to have a new car. I just want my body to work like it’s supposed to. If pain only makes you stronger, then I should be able to kick Superman’s ass by now. I believe Superman would understand how difficult it is to own your story.
I haven’t been labeled as the “sick girl” at this school yet. People have been getting to know me as me, before just seeing my illness. It’s been pretty interesting to compare the “before they know” and “after they know.” Everyone still has questions when my illnesses are visible, but usually they’re put in a more polite way if they don’t know. How could this be? Does the population really believe that people who suffer from illnesses should be treated more harshly? We already go through so many harsh things, things that we have no control over, we do not need more from you. For some reason, one that I can not figure out, knowing about my illness changes people’s perspectives of me and attitudes towards me. I am a warrior with a (mostly) invisible battle. I’ve spent this year trying to hide my story. I believe that it is harder to try to hide your story than it is to own it. So this, right here, is me owning my story, and it is strenuous. This, I believe.
Ainslie is a highschool student based in California living with multiple chronic illnesses. This piece originally started as a school assignment and turned into a Spotlight post: “Half way through the school year, I was less than thrilled to have to write this. It started out as an assignment from my English teacher. I started writing, because I had to, but still wasn’t fully convinced. Life continued, and by the end of the year I found that, as much as I didn’t want to, it was time to share my truth.” You can follow Ainslie on Instagram here.