Monday, April 18, 2011

Where I hid on my summer vacation...

While I know saying this can practically get me stoned here in New England, I absolutely hate summer. We’re not talking about some “Eh, summer is kind of hot” sort of sentiment. As soon as solstice happens in December I realize that summer is once again just around the corner, and I start looking forward with fear and loathing. In the same way that some people with SAD start dreading winter's approach months before the first snowflake falls, I start dreading summer when it’s still -20F outside.

Lupus patients are split on the subject of summer. I would say in a purely non-scientific, anecdotal evidence sort of way that more lupus patients like summer rather than hate it. For those lucky lupies who like it, summer is a time when joints aren’t as cold and stiff, and fingers and toes stop being either dead white or freaky blue. These fortunate people can wear sunblock and then go outside! In the sun! And not be sick for a week! I envy such people.

Unfortunately, there is a significant fraction of lupies who are like me. We are the photosensitive ones. For us, exposure to sunlight will instantly set off a serious lupus flare. So to us, the sun is our mortal enemy (quite literally, sometimes). I’ll stop here so you can get all the usual vampire jokes out of your system… done yet? I’ve heard them all. And yes, I’ve also been called “Caspar, the Friendly Ghost,” as well as “Snow White.” Yes, I’m from California. No, I’m not going to return from a trip home with a beautiful tan. Leaving aside my genetic inability to tan, I can honestly say that twenty minutes in indirect sun even when I’m wearing sunscreen can set off a flare that lasts at least a week. My blood counts will plummet, my arthritis will come back in full force and I’ll have a fever all day, every day. (Also, month-long fevers in the middle of summer? Really not fun). If I’m really lucky and take enough drugs early enough, I may avoid the headache that lasts a fortnight. Many other patients will have a huge red rash appear across their faces, increased kidney problems and any number of other symptoms. Moral of the story? Sun = eeeeeevillll.

The best explanation I’ve read for lupus patients’ photosensitivity is that cells in the body will produce specific proteins when they are exposed to the UV component of sunlight. In normal people this isn’t a problem. In those of us who have immune systems on LSD, however, these proteins trigger an autoimmune response. As is the way of these things, once that autoimmune switch is flipped on, it’s really hard to turn it back off again. Simply avoiding the sun will not necessarily make a flare die down. Every flare is a gamble. It may be relatively benign, or it may be the flare that starts major organ complications. Who knows? It’s like playing Russian Roulette with an uzi—it’s certainly dramatic, but probably not a great idea.

As summer draws closer and closer (I sometimes hear the Darth Vader theme song when I think about it), please be patient with your lupie friends and relations. For those of us who are photosensitive, summer is a painful and terribly isolating time. We will turn down invitations and stay home from parties, hikes, etc. It’s not that we don’t love you or want to go to your BBQs. It’s just that those two hours in the sun could put us in the hospital. Please, please don’t look at us reproachfully and ask, “Well, couldn’t you just wear sunblock?” unless you want us to commit assault. Yes, we can wear sunblock. In fact, not being total morons with a death wish, we do. I personally wear SPF 50 all year round. And I buy UPF clothing to protect me from the sun. My glasses? They have that awesome photogrey coating that turns dark as soon as I go outside. And all of that is still not enough to keep me safe from the sun in everyday life. So, no, “just wearing sunblock” will not allow me or anyone like me to suddenly metamorphose into a normal person. We lupies spend our summers hiding inside not out of some weird desire for total social isolation, but because ERs are really not fun places to hang out. Don’t make it any worse than it already is… and please, could we stop with the vampire jokes?


  1. We, the celtic, also-non-vampires, are with you,(while agreeing that a moderate case of sunburn doesn't equate at all to what happens to you). May we come and hide out in your place and have cookies?

  2. But of course. My place exists to make and serve cookies. Without cookie making it is desolate and directionless. We can draw the curtains and pretend that the evil daystar doesn't exist. Just for the record, though, I have photographic evidence to prove that I am even paler than genuine Irish celtic, uh... celts.

    Actually, I didn't mind the vampire thing until vampires suddenly turned sparkly. Sparkly is *so* not me.

  3. Even summer sunlight through windows? Very nasty. Does the SPF clothing help much? Is it a matter of covering all available skin, or is it that the UV rays are penetrating the hat, parasol, tent, etc? I'll remember to invite you to stargazing and fireworks parties instead (if we're ever in the same place.)

    1. Yes, my (double-layered) curtains are always drawn. When visiting some relatives with a beautiful airy and well-windowed home, I kept breaking out in rashes. SPF clothing helps a lot, and I (grudgingly) wear it anytime I go outside in the warmer months. I've found Coolibar to be a great company with good products for blocking sun, and I have face-powder with SPF 50-55 that I wear anytime I leave the house at any time of year. It's just that even the best sunblocks and SPF clothes let in a tiny bit, and if I spend too long outside that little bit builds up. The sad thing is that I won't even be able to walk for my PhD (assuming I pass my defense) this spring because the ceremony is outside! :(

    2. I should add that I am unusually photosensitive, even for a lupus patient. Most can handle light through windows, the UV given off by fluorescent lights, etc. But I've certainly met others like me. Of course, the fact that I am day-glo white anyway doesn't help matters either. :)

  4. I didn't start doing better until we got rid of the full spectrum bulbs and put uv film on the windows. I'm going to do the car next.


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