I’ve often wondered what it must feel like to be released from prison after decades of incarceration. What happens after the first flush of joy? Of freedom? What unexpected pluses or minuses are there?
Because that’s been my experience over the past, well, close to two years psoriasis free (after 47 years of having a combination of plaque and guttate psoriasis). I don’t know why I was set free from this disease. I didn’t expect to be.
I thought I’d have it until the day I died. I’d long ago given up hope.
And in the back of my mind, there was always that niggling fear that the psoriasis would return with the vengeance it had shown in my late twenties when I was hospitalized. Then it did.
So, what does it feel like?
When the plaques first started to vanish (fairly shortly after starting the protocol) I was in disbelief. Really. I stood in front of the mirror umpteen times a day saying “I can’t believe this. I can’t believe this” as the spots disappeared.
When my skin was clear for the first time in decades (without UVB) I was in heaven. I bought a short black dress and nylon stockings and wore them to a Christmas concert, almost freezing my ass off. I didn’t care. My legs were clear.
Over time I began to settle into the new reality–cautiously. I wasn’t convinced that this was going to work in the long run. How could it? How could a few borderline idiots:) (Flintchick, Charlie, myself) come up with a remedy that had eluded medical science?
I started to lighten up. Some of the edge, the anger, dissipated. Days went by when I forgot about having psoriasis–it was not the first thing I saw before getting out of bed in the morning and the last thing I saw before crawling into it at night.
I could pack an overnight bag and not have to include medications, special soaps, special shampoo, clothes that covered the worst parts, and excuses for why I couldn’t go to the pool or the lake or the ocean–not wanting to be seen–not wanting to experience the stares of complete strangers–not wanting to feel punished–not wanting to feel so isolated from the rest of humanity–an outcast–a leper.
The first summer (2015) I bought three pair of shorts and didn’t wear any of them. I couldn’t. It felt too weird. I felt exposed. Naked. This spring 2016 I sat on the front steps of my building, wearing shorts. Nobody stared.
Life throws us enough to deal with without the heartbreak of psoriasis. To have it removed has been an amazing relief.
So many little things are better.
- The itching is gone.
- The constant vacuuming.
- The fear.
- The battered self-esteem.
- The limited clothing options.
- My body held taut–imprisoned in my own skin.
- The expense of medications.
- False hope.
- No hope.
- The occasional wallowing in self-pity.
Why was I made to wait so long? Why couldn’t my skin have cleared when I could still pull off wearing a bikini? ha!
I’m not sure I’ll ever feel like someone who lived their life without psoriasis. Perhaps I’ll always carry the residue–the scars, that even time can’t take away. But I am feeling different–lighter–happier.
The changes now are more subtle. I recognize them more often in retrospect–“gee, that’s how I used to feel. I don’t feel that way anymore”.