Loving Your Lupus

I’m not going to lie – it’s nearly impossible to find anything lovable about having lupus. But, as I recently came to realize, it’s important for your sanity to try.


Depression (Photo credit: boskizzi)

This past month, I turned 30 years old. I spent most of the prior weeks alternating between being totally cool and blase about it to dissolving into angry, frustrated tears and screaming to the heavens about how hard my life has been and basically that everything sucks. It took a long talk with my mother for me to start remembering all the really fun, good times that I’ve had, the great people I’ve known along the way and the things I’ve done despite all my health wonkiness. This has included going to Europe twice, graduating college, still having my own kidneys after being repeatedly warned that I might need new ones, and being relatively independent for someone with my health issues.

Call it positive thinking or just putting things into perspective, but it’s so easy to become so consumed by all the hassles and challenges of daily living with a chronic illness that all the good things in our lives get crowded out. And if your head is only filled with bitterness, anger and frustration, it’s likely going to spill out into everyday situations and cause more frustration. A great example is that person who starts cursing and screaming on line at the supermarket or on the subway because a coupon won’t scan or someone bumps into them. The action itself is so small yet the hostile reaction is so overblown that onlookers can’t help wonder what kind of day you’ve had – or if you’re just crazy.

How can you keep your life – and your lupus – in better perspective?

  • Practice Gratitude. Whether you keep a gratitude journal, a quick list or just make time to run through a few things in your mind, make it a point to practice finding things to be grateful for. If it’s a bad day, it might take more work, but that’s where the practice part comes in. Start with taking 5 minutes every day and thinking of one thing that you are sincerely grateful for and build from there.
  • Think Small. Can’t think of anything to be grateful for? Maybe you’re thinking too big. Every night when I get to lie down and let my sore feet and back relax, I’m immensely grateful for having a warm bed to crawl into. Having had horrible pleurisy when I was first diagnosed with lupus, I’m constantly grateful for every pain-free breath. Eating a really great meal? Be grateful for the awesome food. First sunny day after a week of rain? That’s worth being grateful for. To me, being grateful is digging yourself into a really good moment and enjoying it as much as you can, with all your senses – because moments are fleeting.
  • Don’t Compare Your Pain to Others. Have you ever been told “well, there are children starving in Africa, so you should be grateful for what you have”? Did that ever really help the situation, ever magically make all you problems and pain vanish? I’m guessing not. While the person telling you this might think that they are helping you put your pain into perspective, often what happens is that you just end being made to feel guilty for being in pain in the first place. There is no race to see who’s suffered the most, so don’t get caught up comparing your situation with anyone else.
  • Create New Good Memories Often. Have a weekly meet-up with friends. If your health is questionable, host it at your place and have every one bring a snack. Make a movie date or try a new class. If you feel as if you’ve been in a rut, step out of your comfort zone and try something new and exciting – you’ll meet new people, learn something and more than likely have a good time. And the great thing about classes is that everyone is the awkward new kid on the first day – so cut someone a break and strike up a conversation with them.
  • Warp Your Sense of Humor. I’m heavily scarred with striae (the fancy term for stretch marks on steroids) from my neck to my knees and one of the first things I talked to friends about doing was painting my body black and white, running around naked and saying I was a zebra for Halloween. Sick? Probably. But its a funny image. And if your lupus has you hiding from the sun and feeling like a zombie all day, maybe its time to get a pair of vampire fangs to complete the effect (and body glitter. Lots and lots of body glitter.). Laugh at yourself and find things about having lupus that aren’t quite so horrible.

What are your tips for blocking out the lupus blues?

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