The Vampire's Cousin

Stitches ready to come out post-biopsy

For me one of the most inconvenient symptoms of SLE is being photosensitive. If I’m in direct sunlight for too long, I come out in large wheals and often flare very badly afterwards. Added to that, the medications used to treat SLE actually increase this sun-sensitivity, and also increase the risk of developing skin cancer. Not so great when we already have such a high rate of melanoma in New Zealand from the hole in the ozone! There’s only really one way to deal with it – avoid being in the sun as much as possible, and slip, slop, slap and wrap when you can’t avoid it. 

You may remember last year I had a biopsy done on a rash on my neck. At the time, my dermatologist thought it may be one of the autoimmune forms of folliculitis, but in December I got the biopsy results back from my GP, and it didn’t show folliculitis but instead showed that the sun sensitivity was likely getting worse. It also probably wasn’t helping that I’d been getting a bit lax about covering up.  

It was really weird timing, as I’d just finished reading What We Saw in the Dark – a novel about three teenagers living with Xeroderma pigmentosum (a rare genetic disorder, in which the ability to repair damage from UV light is deficient) who spend their entire lives living at night, trapped inside during daylight hours. I’d also just met another lupus patient, whose skin, head to toe, had suffered permanent visible damage from sunlight. So all in all, I didn’t feel too sorry myself, as the universe seemed to be spelling it out to me that it really could be so much worse. It was also a bit of a reminder that I do need to take this more seriously, as I want to try and avoid the kind of skin damage this other woman had experienced. 

I’ve been being a lot more careful about not leaving my skin exposed when I’m outside since, which has led to a few “interesting” outfits recently. I did, however, get the best compliment the other day when I attended a friend’s outdoor wedding and she exclaimed “Wow, you’ve actually managed to look normal!” so I think I’m starting to get the hang of it now.

I’ve noticed, that if the subject comes up – which it does when people wonder why I’m piling on on long sleeves, scarfs and hats in summer – I seem to be answering the same questions over and over. I don’t really mind that, but at the same time, I thought it might be easier to set up a sort of FQA on the subject.

What happens if you go in sunlight?
I get Uticaria, which is basically a fancy word for hives. These come up as big painful, itchy wheals and blisters. They then turn into an eczema-type rash, which often then gets infected or ulcerates. Nasty generalised SLE flares usually follow. I also get sunburnt a lot quicker than normal, and have a high risk of skin cancer

So… if you go in sunlight, will you like die?
No, I’m not actually a vampire. More like a vampire’s distant relative.

Aren’t there things in sunlight that humans need?
Yes, the main one being Vitamin D. Having low Vitamin D levels can have an effect on mood, energy levels, and can cause a whole host of health problems. There are some food sources of vitamin D, such as mushrooms and fortified dairy products, but from what I understand if you’re not getting enough from sunlight for whatever reason, it’s best to get it from a supplement. I take vitamin D tablets twice a month, and feel a lot better for it.

Don’t you get hot, being covered up all the time in summer?
Yes, but the reality is it’s a choice between covering up and dealing with the heat, or not going outside at all. I try to arrange things so I can stay inside during the middle of the day, but sometimes I can’t, and covering up with clothing and 50+ SPF is the only way around it. Sometimes this means that I won’t come to events that are held outside, or I may be a bit antisocial at barbeques etc. and sit inside by myself.     

Doesn’t that thick sunscreen mess with your skin?
Let’s just say I’m not going to be doing any cover girl ads anytime soon. This is one of the big reasons I wear a lot of clothing, because it cuts down on the amount of sunscreen I have to use, though in some situations I do have to use sunscreen under my clothing as well.

But don’t you ever just want to sit in the sun?
Personally, sunbathing was never something I particularly enjoyed before I got sick, so this isn’t really something I feel I’m missing out on. I get why this would be a big deal for some people though. Unfortunately, the reality is that when you’re living with chronic illness, there are sometimes going to be things that you want to do, but can’t and you just have to find a way to be okay with that.

Thanks for Reading,
Little Miss Autoimmune