Chronic Illness is Exhausting Work

My partner and I eat all our meals in bed. We’ve never made space for a dining room because it’s simply impractical for us.

There’s a common misconception that disabled people sit around and do nothing to contribute to society. Nothing could be further from the truth. We are everywhere, creating in spite of barriers that our able-bodied peers can’t imagine.

Getting out of bed is a fight with both mental and physical pain, and we don’t leave the bed behind all day. We do a lot of our work from our beds.

Every day is filled with either going to appointments or making them. We have to pay close attention to different symptoms and communicate with care teams to get appropriate care. We must keep track of medications and deal with the effects of changes. Despite all this work to tend to our bodies, a good day usually means only a few hours of usable time to catch up on regular housework.

The pain never completely dissipates, it just increases or decreases, sometimes making it impossible to do anything at all. For the past two weeks, I’ve been enduring the worst pain flare-up I’ve ever had. Every time I try to do a small task, I experience burning sensations in my back and legs. I’ve been using a rollator to get around the apartment. Today I am sitting up, but I need the heat pad on my shoulders and back.

Am I making it worse when I feel somewhat capable of writing? Will I survive if I stop trying to create? Even if it wasn’t connected to money (an unfortunate necessity to acquire food, shelter, and needs), creativity is a necessary part of being alive in itself.

I am trying to say that my life is worthwhile. To whom? Society doesn’t value my life, I am reminded all the time. But I also need to say to myself that my life is worthwhile. Because internalized ableism says it’s not.

Why do I fight to survive? I can’t just get a job and pull myself up out of this hole. I am dependent on others to keep me going. But aren’t we all?

Able-bodied people are blind to their own fragility. They live in a world where pain and disability are a distant side effect of getting old. They believe that they are exempt from accidents and illnesses and the inevitability of whatever brings us closer to death.

Lies about independence and wellness are everywhere. Just exercise. Just stay fit. Just eat well. Just go to a chiropractor. That way you’ll be out of reach of joining that miserable group of people who can’t help themselves survive.

Just as the housed fear homelessness and keep working out of fear, the able-bodied are working desperately to avoid becoming disabled. The irony is that a lot of us landed here from overwork and burnout.

Despite exhaustion, pain, and physical limitations, disabled people like myself must do a great deal. We need to make appointments, find rides, fundraise, support each other, and feed ourselves. Self-care is a full-time job when there’s so much extra maintenance.