Most days, I love Big Pharma. Oh, I know, I’m supposed to hate them because they’re capitalists and try to make money on the medications they sell to the unwell. Or maybe I’m supposed to hate them because natural medicine is where it’s at, and if we hadn’t started treating ourselves with chemical medications maybe we wouldn’t be as sick. Or maybe there’s some other reason I’m supposed to hate them. But let’s get this out of the way: this isn’t about that. And also? I’m not looking for (unsolicited) medical advice.
So here’s the thing: I have psoriasis. Pronounce it “sore-eye-uh-sis”. Yes, a chronic skin condition that makes most people feel self-conscious, and it sounds like it’s got “sore eye” right in the name. Brilliant name job.
It – pso, that is – entered my life back when I was 15. Raise your hand if you remember what it was like being 15. Ick. I managed to get back-to-back strep throat infections — I came down with one, awful, and treated it with ALL 10 days of my antibiotics. 2 weeks later, in a period of high stress (a dear cousin of my passed away), I picked it up from one of my fellow cousins. Boom, strep again! At the time, I had awful tonsils & adenoids that held infection like none other. (Editor’s note: we yanked them out surgically about six months later. Best decision ever?)
And then something weird happened. Along with the strep came… dots. There’s really no better way to draw the picture for you. Like someone dipped a pencil, eraser end, in bright red paint, and went to town. All over my legs, my stomach, a few spots here and there on my forearms. I was polka dotted.
And now here we are, more than eight years later – yes, eight years later – and… well. It took seeing one dermatologist, and ditching him for someone else, to get a diagnosis. Pso. When that dermatologist gave me the “not much we can do” runaround, she got ditched too. I started looking up information – and seeking opinions on who I should see. Never let it be said that I’m afraid to take matters into my own hands. I investigated who our insurance would cover seeing. I found. I told my parents. We made an appointment. I was seeing a physician’s assistant at a dermatology practice an hour from our house. Eight years later, I’m still with that practice, although I’ve switched again and now see one of the dermatologists on the team. He’s my favorite doctor, of all time. He’s proactive. He wants to see me happy, and he wants to see me living the life I had before all that happened. And he’s not afraid to try something new – and he’s not afraid to tell me “it’s your call, but you’re young, and taking the safe choice may not be the best choice”. And as my pso has changed over the years – like, taking over my elbows, knees and calves, while completely morphing from the dot-kind (guttate) to the most common (plaque, another great name) – he’s changed his approach. AWESOME doc.
I’ve run the gamut of treatments. You name it, if it comes in a tube/jar/odd-shaped-container, I’ve tried it. (I probably still have some leftover). I have a narrow-band uvb light box. I’ve tried methotrexate, and it tried to work, but my liver stopped handling it well about nine months in, so that’s done. What’s next for me? Well, The Doc and I have been discussing the transition – from everything else, to biologicals. They’re a big deal. They’re fairly new. Research funding into how cells multiply and replicate, and immune system responses, and inflammatory diseases, have allowed scientists & researchers & yes, Big Pharma, to create a new class of drugs that are helping people try to achieve some sense of a previous life. So we’re talking Enbrel. And we’ll be talking about it in two weeks when I get back to town to see him.
But here’s the thing, world – and I know, I’ve more than used up the “appropriate” number of words for a blogpost so bear with me – the commercials for these drugs are SO missing the mark. At least, for some of us. See, you may have realized this, but I’m not a shut-in. And I’m not depressed (usually). And I get out of my house and I go hang out with people, socially, in public. And I work. (Well, until I left my job). And I deal with little kids on a regular basis. And I’m in a Master’s degree program. And I plan to be gainfully employed soon. I’m not a shut-in. I don’t sit at home and stare at the walls.
Yes, it sucks. Some days it’s physically painful. Others it’s emotionally painful. And yes, there are a number of people confined (mentally, emotionally, physically) by this illness. But not ALL of us are like that. And not ALL of us think that our physical representation defines our self-image. So when your commercials are all, “It’ll be okay – you can go outside again!” and “No more answering questions from people who want to know what’s wrong with you”, I just shake my head. That’s not why I’m doing this. I’m doing this because my future’s at stake – a number of different studies have found co-morbidities for pso, and they worsen if you don’t treat your disease.
So that’s why I’m trying your drug. It’s not because I’m lonely and hate myself. And you know what? I’m not alone in that. So please – stop treating us like a class of people who can’t comprehend walking outside the door. You’re justifying the position that being ashamed is okay until you get help and that’s helpful to no one.
This rant brought to you by a headache, aching skin, a commercial on television, and a delicious bottle of Middle Ages IPA. Signed, Marie with the “really dry skin” on her elbows