This is long, but I felt like just writing it and putting it out there would help.
I’ve had cystic acne since I was 12 and haven’t dealt with it well. This last year my skin has been doing such peculiar things most of the specialists I’ve seen are clueless about why. And it has happened so fast I haven’t had time to address it before racking up a sad amount of damage. Some people by design say health and stress/emotional integrity are interlinked, so for that purpose I suppose in some small part at least, all of this ties into the problem.
Last year I was diagnosed with a mild autism known as Asperger’s. Most might have heard of it – it’s raging in popularity right now to a hilarious extent. I—as well as everyone else—had known for quite a few years that something was off with me but never had someone familiar with the syndrome in girls to diagnose it accurately. It always took an extraordinary amount of effort to speak fluently, be in public, and interact amicably around peers since I was a child, even though my academic ability was off the charts. I often had nervous breakdowns from the stress of it and trying to blend, failing, and being pitied or teased.
When I developed acne I was already struggling in peer relationships and having cysts the size of nickels everywhere and swelling that could take up half my face was mortifying. Attending school was a nightmare, but I was told I would eventually grow out of it.
There were days where I was so embarrassed at my skin (the days when it was bad enough I had to drink out of straws, couldn’t smile or breathe out of one of my nostrils, and had to sleep on my back to relieve pressure on my face) that I just couldn’t leave my house. This was infuriating for me since the only thing positive I had in lieu of friendships and a stressless life was my love of academics. Despite being the best in my year, my alternative school dropped me for my lack of attendance and angry at myself and frustrated about what to do, I retreated to my home and locked myself in my room for a year and a half, teaching myself out of my own collection of textbooks with the curtains drawn.
The days that my skin wasn’t mortifying I ventured out and tried to interact with people and remember I was a human being. To do this, I took my certified therapy dog Snowball whom I adored. She helped me navigate crowds, create space around people, hopped in my lap to stall impending panic attacks, and stepped in or away in conversation and interaction with others, when needed as a distraction from one of my social mistakes or instances of confusion. Since I was also clueless about people and intentions and lacked intuition, she also informed me and pulled me away from circumstances where there were shifty characters that I couldn’t spot.
When I turned 20 she developed cancer and while she was stable on pain meds I knew I was going to lose her. I went in to the doctors, where I had been too embarrassed to talk about my skin and asked if there was anything safe to try. My dog had devoted the last ten years to me and had stayed with me through every second of my depression and isolation and I felt responsible of depriving her of a life. If I could, I would get my skin under control so her last remaining months could be about her, not me and my inadequacy in coping; I could let her live as a dog and not be quite so selfish. I was hesitant before because I don’t react well to drugs.
I was put on epiduo, doxycycline, and birth control for a month before they decided to take me off that to monitor the effectiveness of the antibiotics. It worked very well and for the last 11 months of my dog’s life I went out almost every day with her to the park and in the sunshine.
After she was gone by July 2012 I was on my own again and it was very hard to function without her. It got even worse when most of my biological family ended up essentially disowning me and my grandfather, who stepped into the role as my father died a few months after, leaving only my mother as family. As for the change in my skin the derm took me off antibiotics and had me continue with the topical. By November there was a massive breakout that went all over my face and hardly left a centimeter unaffected. This had never happened before. I was convinced something I had taken had caused this reaction. They wanted to place me back on the birth control or spironolactone, but I refused, alarmed at what other damage I could cause. The breakout cycle stopped at month 3. My skin cleared up with regular topicals intact with no lasting damage. There were other issues going on and I ended up going to a gynecologist, who ran an ultrasound and found I had PCOS. She then told me the derm should have never taken me off the birth control as patients rebound hormonally as mine had. She then told me my skin issues would most likely be a lifelong thing.
After recovering from that breakout I noticed that there were sections experiencing large or small craters of missing tissue with each new blemish. I had never, ever scarred before. Even during my worst breakouts and the most recent 3 month one. My skin slowly got worse and I was alarmed to note every spot I got, down to the smallest whitehead and clogged pore left a depressed scar. And some of those scars kept spreading outward as the weeks went on where the scar ended up being twice as large as the original blemish. I went to a different dermatologist as I could do the math of scarring with lifelong cystic acne and feeling like we didn’t have much of a choice she placed me on spironolactone, doxycycline again, and a topical retinoid. She stated she had never seen scarring like this, or such a rapid change in healing ability in her 30 years as a dermatologist.
After 3 months the spiro did not work, the new retinoid did not work, and I was immune to the doxy. The spiro did cause a large breakout though…which caused even worse rolling scars. I was referred to an endocrinologist, who also said he had never seen this before and had no answers. He wanted to place me on birth control but warned me I’d have to most likely stay on it nonstop for 40 years. If that didn’t work, he’d administer flutamide and other higher potency anti androgens, Lupon Depro, and if all else failed ovarian drilling or removal.
I decided to consult a naturopath because at the least they often practice investigative medicine and if I could find just some logic in this reaction, maybe I could address it. He asked me if anything had changed in the two to three weeks separating healing and scarring. The only things that essentially changed was my body finally adjusting after birth control, restarting a retinol cream I had used in the past, and eliminating gluten and dairy and adding in meat in a vegetarian diet. Nothing stuck out for him.
My birthday is in two days. I’ll be 23. I haven’t left the house in three months as the amount of scarring I’ve accumulated is substantial and all over my face. I’ve forgotten about college. I’m still healing from the cystic breakout two months ago on spiro, and am now watching as a past blemish on my nose is turning into a pit. It will probably look like someone took a mini ice cream scooper to the top of my nose. I’m still continuing to scar. Even if I get my acne under control I’m not sure how I’m going to get myself outside again. People are often confused. They keep saying I’m attractive enough even with the acne – but it really hasn’t been an issue of vanity but of blending in to normal society, which is priceless to me when it comes to functioning. I am stunned every morning realizing how fast it went downhill and just how much damage has been done. At the beginning of this year my skin was smooth. I am clueless about what to do. I will probably have my ovaries removed at this rate, but as I still hardly manage to get out of my house as is a child and motherhood would have been out of the question anyway. It’s amazing how much emotion is infused in a skin condition, how hard it is to make decisions, and not knowing what to do.