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Heavy Meddle: I Have Lupus — But My Friends Won’t Cut Me Any Slack

I was recently diagnosed, and my friends can't seem to respect my new-found limitations. (Helga Weber/flickr)
I was recently diagnosed, and my friends can't seem to respect my new-found limitations. (Helga Weber/flickr)
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Welcome Meddleheads, to the column where your crazy meets my crazy! Please send your questions to advice@wbur.org. Right now. Not only will you immediately feel much better, you’ll also get some advice.

Hugs,
Steve

Dear Steve,

How do I deal with an unpredictable Illness? I was recently diagnosed with Lupus after long suffering with joint pain, exhaustion and a host of other maladies. My friends have been briefed on the situation and claim to understand, yet they are consistently getting upset with me for canceling or rearranging plans and guilting me into favors (like driving, as I am one of the few of us with a car) that I’ve said will exhaust me. They are a great bunch of friends and I never mean to cancel, my illness is just very unpredictable. I may be feeling fine one day and unable to get out of bed the next. Should I stop making plans in advance so as to not disappoint? Is it unfair to expect them to be understanding of an illness that is hard to fathom without first-hand experience?

Signed,
Sick and Tired

PHOTO

Dear S & T,

I was moved by your letter specifically because you seem to me to occupy an expanding category in our cultural moment: the chronically sick who can’t get no respect. Your situation seems to me pervasive. More and more people are getting diagnosed with chronic illnesses, which usually, like Lupus, involve immune system disorders that are quite difficult to describe, let alone treat.

Because let’s face it: when you tell people you have the flu, or strep throat or a broken ankle or (God forbid) cancer, there’s never any question but that you’re sick. Nobody’s going to guilt trip you about missing some evening out, or expect you to give them a lift. You’re sick. It’s their job to bring you soup, or at least ask how you are and make sympathetic noises.

The same rules don’t seem to apply to this new category of autoimmune disorders (Lupus, Crohn’s, Addison’s, Celiac, etc.).

Without a brand-name sickness, the rest of us too often assume that you’re playing sick, bellyaching, being overly dramatic. Witness the behavior of your friends.

About all you can do is to sit each of these folks down and explain to them what Lupus is. They need to know what the symptoms are and that these symptoms intensify and diminish in unpredictable ways. They need to know that you won’t always have the same capacities you once did. If they’re true friends, they’ll see this not as an inconvenience but a source of genuine sorrow. And they’ll modify their expectations and guilt trips accordingly. (They may even extend you the sympathy you deserve.)

Without a brand-name sickness, the rest of us too often assume that you’re playing sick, bellyaching, being overly dramatic. Witness the behavior of your friends.

But let me offer a quick bit of speculation as to why some of your friends are having trouble accepting your condition: I think it scares them. It scares them to see you laid low, and it scares them to imagine that there are conditions that could do the same thing to them. So rather than accepting your new diminished state, they go into denial. In an odd way, it may be part of their unconscious effort to cure you. If they deny the extent of your illness, maybe it will simply go away.

There are also those folks who lump autoimmune disorders together with the various conditions that they regard as more suspect medically, such as “chemical sensitivities.” As someone who has been guilty of this myself, I again urge you to explain to all your friends, and your family, what Lupus is. Don’t let anyone write it off as hypochondria. Consider yourself an educator.

You shouldn’t have to educate people about your condition. It’s bad enough to have it. But that’s where we are as a culture, and where you are as a person. Try to be patient with your friends. If need be, give them that first-hand experience with your sickness. And just as important: try to avoid isolating yourself. I realize it’s hard to be social when you’re suffering. But now more than ever you need to seek out the support of friends and family as you deal with this medical reality.

Having Lupus is a bad break, S&T. Letting the disease define (or confine you) would be a tragedy.

Onward, together,
Steve

Okay folks, now it's your turn. Did I get it right, or muck it up? Let me know in the comments section. And please do send your own question along, the more detailed the better. Even if I don't have a helpful response, chances are someone in the comments section will. Send your dilemmas via email.

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