Invisible Lupus

My face

You look at me, and I don’t look sick.

You’ll notice I’m quite overweight, and if I’m limping, you’ll probably assume it’s because of that.

I sure don’t look old enough or injured enough to need a handicapped parking permit, or a scooter, and truth be told, pure pride is what’s kept me from ever acquiring either. My rheumatologist gave me the form to get a handicapped parking permit years ago and I let it expire. Stupid? Probably. I just couldn’t do it. And I’ve never asked for another one.

I already draw attention from being big, from having adopted transracially, from having more than 2 kids. I don’t need parking lot confrontations over whether I “look like I need” a handicapped parking spot, or having my kids embarrassed because people think I’m too fat and lazy to walk into and around Kroger like a normal person.

I don’t care how much I hurt, unless I’m in a body cast, you’re not going to see me doing either of these things. At least, not yet.

I don’t write much about lupus. I guess because there’s still a part of me, after it took ten years to get a diagnosis, that wants to think maybe I don’t have it. And who knows? Maybe I don’t. Maybe it’s some other autoimmune funky thing going on that doesn’t have a name yet. But after waffling back and forth (Yes, you have lupus. No, you don’t have it. Yes, you do.) we’re just going to call my dreaded “IT” that for now.

I probably also don’t write about it because who wants to listen to someone grumble about their aches and pains? If I do so around anyone older than me, I hear “Oh, just wait til you’re older–then you’ll really hurt every moment of the day!” And if I grumble to anyone my age or younger, they think I’m a crotchety old fart.

Trouble is, many days, many weeks, I feel like I’m about 80. I told my husband the other night, as I tried to get comfortable in bed, that it felt like every single one of my joints had been sprained simultaneously. Every knuckle throbbed, every toe. Even my ribcage felt like it had been beaten, front, back and sides.

The aching. You just can’t imagine it if you haven’t felt it.

I just shifted in my chair and pain ebbed through my legs like I’d ran ten miles yesterday, when all I did was shop, cook and clean — and not even that much. Sometimes at night, I have to gather courage to roll over because I know it’s going to hurt.

The past two weeks, I’ve battled exhaustion. Again, the exhaustion — it can be hard to describe.

Think of the last time you were coming down with the flu, when you were hit by a tiredness so deep, you had no choice but to lie down. Or, early pregnancy — it’s that same kind of all-encompassing exhaustion that drives you to bed whether you want to go or not.

Sometimes it feels like someone suddenly pulled the plug, and all your energy just poured out and evaporated. And then it doesn’t return, sometimes for days. Sometimes, not for weeks.

Last night, I was so tired after cooking dinner that I was too nauseated to eat it. I sat down on my bed until the nausea passed and I had enough energy to fix my plate.

There’s a running joke in the family that I am physically incapable of watching a movie, because it’s rare that I can stay awake that long. I avoid my recliner all day, calling it “The Chair of Doom” because if I let myself get that comfortable during the day, I will be OUT like a light. Part of that is because I don’t sleep well. Insomnia is also a common issue with lupus. So you add up the lack of sleep, the pain, the exhaustion from the disease and it’s no wonder I can’t sit still without dozing off.

Other symptoms I routinely experience are multiple mouth and nasal ulcers, scleritis (which feels irritating like pink eye, but the white part of my eye puffs up with fluid), rash and fever after sun exposure, muscle weakness and headaches.

So if I don’t write about lupus, and I don’t like to whine, why am I writing this?

Well, it’s been a difficult couple of weeks. And tonight I feel lousy. I guess I just want someone to know that I’m not a freak; that there really is something I’m battling here. Some people do know, but a lot of people don’t know that….

-If I cancel plans last minute, it’s usually because I just can’t muster the energy to go.

-If I don’t want to join you hiking in the sun, or go on an all-day shopping marathon, or help you move furniture, it’s not because I don’t want to be with you. It’s because I know I have to pace myself. One day of overdoing it can mean a week or more of misery. I’m too busy to lose any more days and weeks to this stupid disease.

-If I come across as a bit of a germophobe, well, I kinda am. Because my immune system is busy attacking my own body, it doesn’t always fight off invading germs very well. Normal illnesses can make me sicker than others and cause complications that other people won’t suffer. I’ve mentioned before how a respiratory infection several years ago led to an autoimmune muscle inflammation that took many months and physical therapy to recover from. I have four kids and I gamble a LOT when it comes to germs (i.e. teaching preschoolers at church, going to parks and other potentially germy places for kids, going to Uganda was a big ol’ totally-worth-it gamble!) but that is because I want to minimize how much this illness interferes with what’s important to my family.

-I appreciate — truly, I do — the concern and interest that’s behind all the tips and offers of various natural, herbal and otherwise “alternative cures” but…know that I’m a research junkie. I look up stuff all the time. If you propose something, I’m going to ask my doctor about it and look for reviews and talk to other people with lupus and find out what their experiences have been. I’m not being stubborn or stupid if I don’t try your supplement, shake, powder, oil, or diet. Some of those things can be dangerous for people with autoimmune disease and there’s a good reason that I’m distrustful of a lot of promised “cures.” (I tried an herbal energy supplement a couple of months ago that put me into a flare.)

-I never know when a flare is going to hit. I have identified some triggers, such as extreme mental/emotional stress, prolonged sun exposure, and strenuous exercise. But even these aren’t always 100% guaranteed tickets to Lupusville. It’s such a weird disease.

-Finally, I don’t always feel like this, thank the Good Lord above! I can go weeks, sometimes months, without any real symptoms. I don’t always know what’s going to trigger a flare, how long it will last, or how bad it will be, but when I’m feeling good, I try to make up for all the times I’m under the weather.

So, just keep this in mind: when I say I need a nap, when I say I’m in pain, when I quietly retreat, it’s probably lupus driving me to do so, and not anything you did or didn’t do.

(Unless you made me hike up a mountain, carrying your groceries, without any sunscreen and then maybe, just maybe, you’re at fault!)

Thanks for reading, for understanding, and for praying for me and everyone else who suffers from lupus.