An Itchy Tale
Right now I am half awake, not even sure if I can even write something well because I feel so loopy from only having slept 4–5 hours or so after having been kept up yet again by the part of me I hate the most, my skin.
When it comes to the idea of suffering, the first thing that comes to mind is pain. Chronic pain, headaches, heartaches, emotional trauma. All of the things that bring on that familiar cringey feeling. Pain is something we all learn to avoid as much as it is unavoidable, so it makes sense to think of it as the point of suffering. But for me, as much as pain has been a part of my life, the thing that has defined suffering has been a much more innocent, a much less understood form, itch.
For most people an itch is something you get from a mosquito bite, or when their cut is healing. For me, it is an insurmountable obstacle that plagues me with its power to disrupt my life at the most random instances. I was born with something called the Atopy. It is a genetic condition that is passed down and not much is understood about it except for what it looks like. It comes in the form of an Atopic Triad, meaning three conditions all rolled into one. This includes Asthma (difficulty breathing), Rhinitis (stuffy nose), and Dermatitis (itchy skin). I like to add a fourth to make it a Tetrad, which is Allergies. Somehow all of these things are tied together by something in the genetic code that is being passed on, and the latest research seems to focus on a particular mechanism that binds the epithelial layers together. What this means is that the things that are supposed to protect you from invaders outside the body, your skin, the inside of your nose, the stomach and intestinal lining are compromised and lets in things they aren’t supposed to. Because of this all this foreign stuff gets in, the body identifies it, and attacks it. This is the basis for all allergies. Atopy makes it all dial up to eleven. Another side of the story is the auto-immune. That part where your body attacks itself. Whether it is a result of the weaker barrier or vice-versa is up for debate, but the result is the same.
When I tell people that I can’t sleep because of the itch they can empathize. Ooh, that’s rough. But it’s because we all know what it’s like to lose sleep. I don’t think it’s because they know what it is like to scratch your face and whole body in the night all alone wondering when it will stop. Or what it’s like to feel ugly when your face, your arms, your legs are all red and scabby when you have to go to school or work the next day wondering if everyone is glancing at you in disgust. Sometimes when it was bad enough the skin even hurt wearing clothes because it would brush against the wounds you created on yourself the night before. Then when it starts to heal it starts to flake off and it just looks like you are diseased. There are blood stains on my sheets, pillow cases, and blankets that accumulate over time. I’ve fell into depression over all the mental side effects of the condition. When I was in a relationship it prevented me from being intimate, and forced me to sleep in a separate room to make sure my partner could at least get her sleep. I have spent so many nights up alone in the dark in front of my computer playing videogames or watching something while binging on snacks to distract myself as I patiently wait for yet another flare-up to end. Sometimes it would take half an hour. Other times I would still be up when the sun rises. All this because of just some itchy skin.
There must be some treatments for this, right? Yes, you’re right. There are. And I’ve tried all of them. The most basic is a topical corticosteroid that helps calm down inflammation that is responsible for the itching. Or at least it’s supposed to. I’ve used it for years and still somehow it breaks out. There are also oral corticosteroids like Prednisone that mimic the stress hormone in the body at higher levels. This works temporarily to calm everything down and give me a huge boost in energy, but using it longer than a week or two has significant side-effects like weight gain, muscle loss, and a myriad of other complications. Eventually I tried harder immunosuppressants like Methotrexate and Cyclosporine, drugs meant for cancer treatment and organ transplants respectively. These carried with them significant risks of organ failure and made me feel sick in other ways. I’ve went back down to the lighter stuff, but mostly I manage just through patience and planning my days around the worst of it as best as possible, yet I still end up going to work and classes or exams sometimes with barely any sleep and an unclear mind. There is hope in some new classes of drugs called Biologics that manipulate parts of the immune system directly. They are given as injections and cost $10,000 USD+ per year and aren’t covered by most health insurance. Haven’t been able to try those yet.
At one point in my life I was so sick of living with this condition that I vowed to myself to do whatever I could to fix it. I used my university access to drill down through the medical research I didn’t fully understand to see if I could figure out something I could do that hasn’t been medically approved and tested. It made things exponentially worse, but I pushed through hoping that things would be better on the other side. I went through experiment after experiment fully hoping it was curable somehow, but I think in the end it only exacerbated my condition for the long run and I regret it. It made me paranoid about the food I was eating, the lotions I used, the things I was wearing, the activities I did. It made me avoid everything that had value in life and consumed me.
As a whole, on a daily basis, I’ve managed to find my peace around this condition. Learned to work around it as best I can. But there are still deeper fears that it also brings along with it that are more difficult to explain in a passing comment. I’m afraid of dating again because on the surface it looks like things are alright. I make good conversation, show some interest, laugh and have fun, but I know first hand the experience of what it is like living with me and am constantly afraid whoever I might connect with will only be turned off in the end when they see what it is really like. Even if a relationship works out, if I chose to start a family I fear that having children will only subject them to the same kind of suffering I’ve experienced my whole life, and just the thought of that seems cruel and hurts to think about. Sure, they may have other parts of them that define who they become, yet I can’t get myself past the idea of throwing the dice and placing this genetic prison onto them. It may seem exaggerated to other people to think this, but I often feel handicapped compared to others yet I also envy the actually handicapped since they at least get assistance and understanding that I would never receive. It’s not a nice thought to have, it’s not fair to the handicapped, but the thought often crosses my mind.
I have avoided talking about this my whole life out of fear that people wouldn’t understand or that it would simply make me even less desirable to be around. I probably also don’t want to be pitied and treated differently. But I’ve also realized that whether I talk about it or not doesn’t really change my reality, or make my condition any better or worse. If anything having others understand and share the sentiment would probably reduce the stress that the weight of secrecy places on the whole thing. I have people in my life I care about and that care about me, who know that I’m not some disgusting monster, so I hope that that doesn’t change. On the inside I’ve learned to see myself in a different light, to define myself based on my strengths over my weaknesses, yet I’m sure there will always be that ugly little monster hiding there telling me I’m disgusting and ugly and that I will always have to deal with this suffering alone. Of all the dreams I have, the things I want to become, I think that getting rid of that feeling is one of the things I’ve wanted most in my life.
One time I read something that stuck with me. The healthy wear a crown only the sick can see. I see those crowns every day as I pretend to wear one of my own. Maybe it’s time to stop pretending. I was never really good at it anyway.
