On Tuesday, amongst a million other things, I had a good chat with one of my dermatologists. It was a bit of a debrief, I guess. We didn’t talk much about my skin, other than the emotional and social impacts of it. Since hospital, and hospital again, my skin’s felt ok. It’s the heart and mind stuff that’s troubled me. How to cope with stuff and when to take a step back. How to manage expectations of blog readers and people who seek advice from me. And whether the social challenges of ichthyosis should be healed above the medical challenges. We returned to what I wrote about in March – quality of life. So much food for thought.
One of the major things we spoke about was a breakthrough in medication. There’s a new drug that has the potential to dramatically reduce the inflammation of my skin. Great! Not as many people staring at me. I can walk down the street in peace.
But. And there’s always a but. Administering the medication is quite complex. And the other big side effects are that it would not reduce the dryness and scale, and also make me more susceptible to infections.
So we talked about how I can deal with the redness and the social challenges that come with that. But I can’t deal with the pain of infections. It’s. Just. Too. Sore.
And I mentioned something I hadn’t thought about until recently. For most of my life, I didn’t want to be red. Black or white or a skin colour that society is used to. Anything but a skin colour that makes people stare.
But it’s now come to this. My redness is my profile. I tell stories, and have the face to go with the stories. People often want to get to know me because of how I look (rather than how it was – people not wanting to get to know me). I am remembered by those that matter. I now have to use my looks to make a positive impact. A bit like the way bikini models use their bodies. And maybe, for maximum impact, I could strip down to my bikini too.
So if I wasn’t as red, how would I get messages across? How would I show someone what it’s like to look so visibly different? And as a friend said to me, people may get the impression that I’ve “had so much work done since I’ve been on TV”. Hah!
Have you ever been given the opportunity to use a medication with such big opportunity costs? And have you eve been thankful for your illness or disability because it gives you a great life?