My Honest Answer to 'Yes, But What Do You Do?' After Becoming Ill

In my water exercise class, I am 10-20-30 years younger than the others. And most of them don’t use a cane or walking stick like I do. Getting out of the whirlpool a few weeks ago, I heard behind me, “What’s the matter with her?” The response: “Oh, she’s got a lot of problems, all in her back and more.” Then the first one again: “Mm-mm-mm, least I was old when I got my problems.”

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Add to that most of them look at me and think I’m in my 30s when I’m actually a few months shy of 50.

I hate meeting new or newish people, those who don’t know I have ankylosing spondylitis and fibromyalgia, who haven’t seen the walking stick or my few blog posts, or who last heard I was tenure track and writing and and and and and. It’s not the first but the second or third, “Yes, but what do you do?” that makes me ready to go home. It’s too much to explain:

I hurt too badly to think the way working/non-chronically ill people do without effort.

I hurt too badly to even imagine thinking my way through the simplest problem or an interaction that goes on long enough for one of my pain centers, or three, to go off like fireworks.

I have to sit down. Now I have to stand up. Now I need to sit. Now I need to lie down. Where’s the bathroom? Are there stairs? How many? How long is the drive? When can I get back home to put on my pajamas and play mental games to feel like a human and not a raw nerve wrapped in deteriorating joints and inflamed tendons and muscle spasms that have, and will again, soon I’m sure, make me cry?

I have so little of the life I used to have, that I wanted, that I actually needed and worked so hard for. My degrees. My profession. My writing. My colleagues and friends.

Even I hate that. It’s not embarrassment. It’s disgust. But if I walked around fully and flamingly disgusted with myself all the time, I wouldn’t be walking around at all.

So what do I do?

I rest. Which doesn’t ease the fatigue but lets me get through a day without crying, screaming at people I love, or being too weak to move my arms.

I do laundry. All week. I can sort laundry or load the washer or load the dryer or empty the dryer or fold or put folded items away. If I do two of these things in the same day, I need a one-to-five-hour break in between.

I walk my dog. Infrequently and not very well or far and with a walking stick. And moderate to severe pain.

I make simple meals, one a day or every two to three days. In between I snack, eat takeout or just go hungry because I am too f*cking tired to cook and then chew the food.

I take vitamins, supplements, a DMARD and an injectable biologic. The last two aggravate my fatigue. That’s it so far. An antidepressant to sleep more than a couple hours and not spend my hours crying over pain, isolation, the well-meaning but skin-tearing questions, doubts, bad advice and me-too-isms of those who do not understand, or see any need to understand, chronic pain or illnesses.

I cling to my smartphone — Facebook, friends, family, email, texting, Amazon because it is easier to have the postal worker or delivery person carry it up the stairs to my door.

When I can, I read until I can no longer concentrate because of the pain itself and/or shifting positions every few minutes because of pain. I used to read 1,000+ pages a week. Now? Maybe 40. Seventy-five on a really good week.

Then I get up the next day and do it again.

That is what I “do.”