Recently I have been moving through life like I can’t quite believe that it is happening. I have an appointment to switch my skin medication on Wednesday, which means that I have to stop taking the meds that gave me my life back and go on something else that has no guarantee of working. I have been angry, too, at how unfair this all seems - that my options are seeing what happens if I am on nothing, or being on one of many meds that each carry their own unappealing set of side effects. TSW is truly one of the most harrowing experiences I have ever been through and it feels incredibly lonely at points. I often feel like, with my reliance on medication, that I am living on borrowed time.
I am not sick right now, but the ripples of the worst of my sickness still imprint on every aspect of my life. This is all mostly coming from my need to talk about what sickness took away from me without feeling guilty about complaining. I know that I have a good life - I have love and friendship and a job that I may hate but at least it pays - but still I can’t seem to shake this feeling that I am not supposed to be here, that things were not supposed to happen this way. I wake up in a house that I was not supposed to be living in and I go to a job that I was not supposed to be doing. Again, I know that I am lucky. I am lucky that my parents live in London and I could actually go home when I got sick. I’m lucky to have gotten a job in this market. But still, I reserve the right to say that the aftermath of the sickness haunts every single day of my life.
In the summer of 2023 something weird started happening to my skin. It wasn’t eczema, although it looked and felt like it. Steroid creams were not doing anything - if anything they were making it worse. Every time I put on hydrocortisone, my skin would get better and then proceed to get three times worse. I was actually in the early stages of TSW, though at the time I vehemently ignored this fact. Reading about people who had lost 10+ years of their life to TSW left me sobbing and isolating myself. I remember when it got really bad - that winter in 2024 - I cried and pinched at the skin on my face, not recognising myself in the mirror. I was red and flakey and itchy and everything hurt. Inside and outside.
I like my face. I am not saying that in a vain way - I just genuinely and truly like how I look. When I lost that I felt like all the youth I had yet to live had been snatched from me. It was so dry that any line I could possibly have had as a 26 year old woman was exasperated by tenfold - I looked like I had aged 20 years in two months. I couldn’t see myself anymore. It was like I had time travelled to a place where I had already lived all the experiences I was missing out on. I saw a bandaged and swollen version of myself, one that didn’t shower for days on end because the water was hurting my body. I didn’t get dressed for months. I had dreams about wearing jewellery when my skin could tolerate it again, about eating whatever I wanted without worry of a flare, about never having to explain to a dermatologist again that it was the fucking steroid creams that did this to me and to please, please stop pushing me to take more. I lost my job. That isn’t entirely accurate - I left my job because I just couldn’t do it anymore. I wasn’t performing well. My sickness had left me lacking in sleep, itching into the night, sore. I turned up 20 minutes late to meetings and took weeks to finish projects that would usually take me a couple of days. I had to leave. I still mourn that now. It was the only job I ever had that didn’t leave me wanting to die at the end of the week. As I re-entered the job market, a year later, medicated and smooth skinned, I scrolled through post and post and kept thinking that I shouldn’t be having to do this.
I had a flat, too. I shared it with a girl who was okay, and we got on most of the time. I miss our mundanity now. Most of all I miss being independent. I moved home when I couldn’t look after myself anymore. I miss sitting on my balcony in the room I paid for all by myself, using my red light mask and smoking. I miss my flatmate complaining to me about the guy that didn’t text her back. I miss inviting my friends over. I miss running out of the house at 8am because I was late for work. I miss making myself dinner and meal prepping. I miss going to a yoga class after work at the studio I could barely afford. I miss my life before. I am rebuilding it, and I have a good one. I don’t think I am ungrateful for feeling a deep ache at the one I lost, though.
I saw a car sticker the other day on my way home that said “I’m not lost, I’m exploring” and it really struck me. I did have a thought like oh, I really am fucking crazy because I think that God is speaking to me via a Clio, but for whatever reason it moved me enough that I look a photo of it and pinned it to my notes app. Anyway, here it is.
I’m not sure what the next few months will have in store for me. I hope that these new meds are kind to my body. I hope I can do better at the job I don’t like, maybe even find one that I do like. I hope that all of my hobbies come back to me and that the person I was before this happened slowly unfurls herself from the coil I shoved her into.