I recently took my first dose of Stelara, an injectable medication known as a “biologic” that treats, among other things, psoriasis. I’m so excited, I could pop.
What is Psoriasis?
Psoriasis is an extremely visible autoimmune condition which results in red, inflamed skin with scaly white flakes. My immune system is attacking my skin, causing the affected skin cells to turn over at a dramatically accelerated rate (7-10 times faster than healthy skin!) The severity of my psoriasis can be seen not only from the outside, but from the inside as well. My bloodwork shows evidence of systemic inflammation, which puts me at risk of developing other illnesses, including psoriatic arthritis.
Treatment with Topicals
For the past 15 years, I’ve tried to make topical creams, ointments, solutions, and for a while, UV light treatments, work for me. Using topical treatments properly requires that you follow a schedule of twice-a-day application for two weeks on, two weeks off in various combinations of steroids, vitamin D derivatives, and whatever other prescriptions you’ve been given. It takes me about 30-40 minutes each time.
After about a week, I see definite improvement, which used to be incredibly exciting but is now a pointless exercise in bitter disappointment. As soon as I begin the recommended two-week steroid-free period or simply run out of motivation, my skin begins the infuriating cycle all over again, often worse than the last time. I have never had a period of complete remission.
Treatment with Biologics
I reached a tipping point. I don’t know what exactly pushed me over the edge, but I know that I can’t take it anymore. My psoriasis is “severe,” meaning at least 50% of my body’s surface area is affected. Topical treatments aren’t enough, so my dermatologist and I decided that Stelara is the best option for me.
Biologics like Stelara function by suppressing the immune system, which puts you at risk of infections and certain cancers, but the newer biologics are more targeted than older ones. They attempt to treat only the parts of the immune pathways that are going wrong, which reduces the impact on other immune system functions.
Take That, Psoriasis
It makes me anxious to include photos of myself in this post, but I’m tired of trying to navigate the steps I take to hide my skin. Do I dare wear something with an open back? Should I stick to shirts that go up to my neck? Better avoid dark colors so the flakes aren’t obvious.
Psoriasis has been squashing the self-confidence out of me since I was 10 years old. Knowing that I’ll likely deal with psoriasis in one way or another for the rest of my life, I’ve worked to derive my confidence from who I am rather than how I look, but it’s an internal conflict that I’ve never completely solved. I desperately want Stelara to work for me. It’s exhausting to be, on some level, constantly self-conscious. I can’t fully imagine how much of a relief it would be to put that behind me, but I also don’t want to forever be embarrassed about these years of my life. I don’t want psoriasis to win.
This is what I look like, and if you look like this too, know that you don’t have to fit societal standards to be confident in the skin you have.
Living with Psoriasis and Self-Criticism
[In this post, I describe my feelings about life with severe psoriasis. I do not want readers who have skin conditions or any physical differences to be hurt by my self-judgments and insecurities. My words are about my experience only.]
It’s taken me so long to come around to the idea of taking a biologic because I blamed myself for not being more consistent with topical treatments. I thought that if I could just be more diligent, my psoriasis wouldn’t be so bad.
It was like boiling a frog; maybe I could have kept it at bay in the beginning, but it just got worse and worse. Eventually, I was so accustomed to it and so convinced that its severity was my fault that I chose to stay in the scalding water rather than get a lift out on a ladle. I also do this with my mental health; I must not be trying hard enough. If I just keep at it, I won’t need to accept more help. If that sounds completely unreasonable, it is – but it’s hard to change thought patterns like that.
Bottle it Up (don’t, though)
I’m 25 now, and my psoriasis is so severe and I’m so disillusioned when it comes to making a dent with topicals that I only use them “as needed” (in my view of “need”). When just twisting at the waist splits the plaques down to raw, bleeding skin and I can’t stand the torture of having unreachable itches in my ear canals, my motivation is briefly renewed. When it inevitably worsens again and I can’t manage it, I’m hard on myself for letting it happen then and all the times that came before. So in order to deal with despair over what I came to see as a failure to fix myself, I became an expert at avoiding the emotions of it. If I let myself fall apart every time I thought about it, I’d never move. It’s far more comfortable to disconnect.
The reality of living every day in this burning, itching skin is too horrible to acknowledge all the time. Instead, I bottle it up until it explodes. I can go long stretches of time feeling like I genuinely don’t care – as long as I cover it with my curated wardrobe of acceptable garments and don’t have too much psoriasis on my face, I’m really quite good at pushing it out of my mind.
But eventually, it’s like I catch a glimpse of it from a stranger’s perspective and am knocked over by the pure shock of it. It hits me suddenly and I break down into tears and fury and grief over how it holds me back and the hopelessness that it could be forever. I’m suddenly overwhelmed by how disgusting and ugly I feel – judgements that I try to keep beneath the surface, but which sometimes bubble up painfully. Then, I gather myself up, shove it all back down, and tell myself that self-pity is pointless. I basically close the Faulty Logic Door on the Emotional Vault until the next time it explodes. Super healthy.
Prioritizing Experience over Appearance
Despite the harsh messages I send to myself about my appearance, I still want to move through the world unhindered by social stigma. Lately, I’ve been pushing myself to wear clothes that make me a tad anxious and, with the exception of swimming, I never let it stop me from participating in things. I’m always worried that people will be rude or hurtful, but that’s rare and stems from ignorance, not malice. Some people stare at me and I occasionally get well-meaning but unsolicited and questionable advice from strangers, but I’ve found that the vast majority of people don’t even bat an eye.
By virtue of being literally on the face I present to the world, facial psoriasis is particularly hard to deal with. Everyone sees it and has thoughts about it that I’m not privy to. My fears that those thoughts might be judgmental and mean are hard to set aside.
I decided a long time ago that wearing makeup to cover my psoriasis was not worth it. Besides the issues of time, money, and probable skin irritation of heavy-duty foundation and concealer, my desire to fit in and feel confident bumps up against my belief that it shouldn’t matter. It seems like a step too far for me, but for others, it makes a huge difference in their confidence, so, to each their own.
Mild topical steroids and other prescription creams do improve my facial psoriasis considerably, but only for as long as I’m using them, which is sparingly. The skin on your face is delicate, and the decade and a half that I’ve spent using topicals makes me reluctant to risk the side effects of overuse or – God forbid – getting them in my eyes. That’s tricky for me, because I have psoriasis on my eyelids.
On the left is how I wake up during a period of average/low inflammation. With very gentle soap, some careful flake removal, and unscented moisturizer, I can sometimes go from that to the righthand photo without using a prescription cream, which I save for really terrible days. I tend to have wonky, uneven eyelashes because, during bad flares, psoriasis spreads along my lash line and causes sections of eyelashes to fall out.
Interference and Feedback Between Psoriasis and Mental Health
Stress is a common trigger of psoriasis, which is hard to fix because having psoriasis is pretty stressful. As my mental health waxes and wanes, my psoriasis follows suit in an awful feedback loop. The stress of depression makes my psoriasis flare, and the hit to my self-esteem certainly doesn’t do good things for my depression.
My mental health definitely gets in my way when it comes to skincare. Even if I didn’t have depression, I probably wouldn’t be able to keep up with the treatment routine, but when depression makes getting out of bed and changing my clothes difficult, you can bet that I’m not spending an hour and 20 minutes per day applying goop to the skin I hate looking at.
Overwhelm and Support
Depression and psoriasis are both chronic and painful, and they both take a lot of work to manage. Metaphorically, the overwhelmingly hopeless experience of depression feels like trying to beat back a chronic rash that covers your whole body using nothing but a little tube of ointment. Each is a monumental effort that seems to never end. I’ve learned that tackling difficult, stigmatized issues gets a little easier if you don’t do it alone.
Lithium, which treats my depression and suicidal thoughts, has the unfortunate side effect of causing or worsening psoriasis. (Is that a cruel joke, or what?) I’m not sure how much of an impact it’s had, but I suspect it’s contributed somewhat to the progression of my psoriasis.
[Left: After a dedicated effort to clear my skin in time for a wedding in 2018. It was brief but wonderful. Right: A terrible flare in the cursed year that was 2020.]
Any time I spent bullying myself about my skin and my willpower was too long. This change is not a failure, but a success in finally allowing myself to accept help.
Stelara is a momentous step for me; I’ll admit it’s filled with a fair amount of bitterness about how many years I’ve spent suffering, but also acceptance, excitement, and hope.