For anyone who’s been reading this blog frequently you’ll notice I like putting in references to pop songs or books I’ve been enjoying. Yesterday evening I was on my commute home listening to Florence and the Machine’s latest album (no scoffing please, music snobs) and the song lyric “no light, no light, you can’t choose what stays and what fades away” took on new meaning for me.
Yesterday morning was my appointment with the dermatologist. The registrar was very nice as were the two young male medical students who sat looking a bit embarrassed that they were about to see a patient under 60 in their underwear. If you’re ever asked to allow med students to observe and you aren’t too uncomfortable with it do let them, our future doctors need to learn by looking at real humans not just textbooks.
So there we all were, observing the red splodges on my skin discussing if I burned easily in the sun and the moisturisers I use. The registrar turned to the students: “the patient has type 1 skin”. Oh, I thought, that’s sounds good, being number 1 is usually good.
“You’re plaques aren’t thick at all, your skin’s very smooth”. This is true, I am luckily not someone with the very thick plaques and my skin is improving. So it transpires that with “type 1 skin” and “smooth” splodges I am just below the severity level to qualify for UVB light treatment. The increased level of risk of skin cancer is too much because my skin is so pale (thanks Celtic heritage) and I’ve already had 2 courses of UVB light treatment 10 years ago. Instead the doctor prescribed me oodles of potions and lotions and sent me on my way.
Walking back from the hospital through the rain I felt quite upset. I had decided I needed light treatment. I’d made that decision in the middle of my flare up. It had worked before so that’s what I needed. Two and a half months later I knew my skin was improving and kept the appointment to “be in the system”. The waiting list for light treatment (phototherapy) is 6 months. That’s a long time to wait. My skin, thankfully, reacts faster than the NHS has resources.
I work in health policy, I know the pressure the NHS is under. But I’m also a patient with a lifetime of knowledge of my long term condition. I felt I knew what I needed. But, and this I think is important, I’m not a dermatologist. When I was in the middle of my flare up, which lasted at least two months, I was very distressed. I felt unattractive and out of control. But, my psoriasis is not as severe as it sadly is for others and I am very grateful for that. I have to accept that for all of my expertise as a patient, I’m not a doctor.
Its so hard sometimes to accept that we don’t always know what’s best for us. Yes, UVB light treatment would make my psoriasis fade now, but the next time I’m stressed it will come back. I shouldn’t put my skin under long term risk for a short term gain and nor should I take up valuable and scarce NHS resources when its not deemed medically necessary.
My last post was about not being informed well enough by a doctor to make an informed decision as a patient. This is about accepting that the doctor, the person with the training, is informed enough to be able to tell me what is best for me and my skin in the longer term. So you see, I can’t choose which bits of my psoriasis will stay or fade away, but I can choose to take informed advice that no light is better for now.