Tuesday, April 15, 2008

My disease is worse than your disease

People around you, when you have a chronic illness, don't understand when you can't go to social outings 3 times a week because it's too tiring, or other things you have to opt out of, even though you would love to do them. the weird thing is, those of us with lupus don't even fully know our own limitations, because i don't know about everyone else, but mine change all the time. so maybe what i could do last time someone saw me, I can't do this time.

I've heard horror stories about husbands who are just monstrous when their wives develop lupus. One of them actually went to the doctor and asked to be tested for lupus himself. Another is a "recovering" addict who needs knee surgery and takes all his wife's pain meds, leaving her with none to manage her lupus pain! my husband is awesome, and i feel so lucky to have found someone who really loves me despite this stupid illness. we're newlyweds, BTW, 9 months now, so you *can* find love after lupus. i didn't think it was possible.

the one thing he doesn't understand is how loud noises and bright lights and other forms of overstimulation are upsetting to me and always lead to a migraine. i have to keep telling him to talk quieter. it's like i have a perpetual hangover! no one can ever really "get it" no matter how wonderful a human being they may be, unless they have suffered something very very similar for a long enough time that they don't forget what it is like. in other cultures, BTW, you cannot be a healer unless you have suffered. very different from our medical system, which is seriously lacking in empathy and compassion. but i suppose that's another story. sort of. i mean they can be really invalidating too. i had a doctor tell me once "it could be worse. you could have cancer."

I snapped. I said well at least if you have cancer you either get better or die! (as opposed to draggin around feeling like crap and popping pills for decades!). He caught me at my wit's end- what can i say. But i don't regret it one iota. Not because I think lupus is worse than cancer or cancer is worse than lupus, but i just think it's *so* wrong to play the "who's got it worse?" game. I don't think he could have picked a worse thing to say. He's lucky I'm too weak to strangle anyone.

Something from the bible that has stuck with me: “it is not wise to compare amongst yourselves.” For example, lupus can be much worse or much less severe than breast cancer. some cancer patients just have a lumpectomy; others have it travel to their lymph system and die a painful death. Some lupus patients have mild fatigue and rashes while others, like me, suffer kidney failure, migraines, pleurisy, high blood pressure, anemia, congestive heart failure, even a stroke during a flare- it can still be a deadly disease, and most who die from lupus die of heart failure. And getting lupus doesn't exclude you from getting cancer, or vice versa. I've met folks who have had both.

So, in getting out of the pity party and competition frames of mind, I think that gratitude is definitely a very powerful choice. when I am feeling really stinky sorry for myself because I can't do the things I'd like to and no one understands and this stupid thing is probably never going to go away (notice I said "probably" even after 16 years of this, I still have hope!) I make a gratitude list. it’s a real pick-me-upper!
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