There Is No Wheelchair for My Hands

For years, I measured a working day by meetings, deadlines, emails and deliverables.

Now I measure it by my hands.

Can't ignore the pain in my hands

How long can I type before the pain becomes difficult to ignore? How much mouse work have I already done today? Can I safely carry this? And when I finally close my computer, will there be enough left in my hands to make dinner, hold my cutlery or simply take care of myself?

I live with psoriatic arthritis

My hands are visibly deformed by the disease. You can see that something has changed. But seeing my hands and understanding what those changes mean are two very different things.

I sometimes find myself thinking: There is no wheelchair for my hands.

My relationship with arthritis goes back many years. I was diagnosed with osteoarthritis 16 years ago in 2010, then inflammatory arthritis in 2013 and psoriatic arthritis in 2014.

Adapting to the changes caused by arthritis

For much of that time and since then, I kept working.

I adapted. I found different ways of doing things. I worked around pain. I used accommodations and assistive technology where they helped. I changed how and where I worked.

Like many people living with chronic illness, I became very good at finding ways to keep going.

But adaptation has limits.

Accepting the changes in my hands

Over time, my grip deteriorated. Fine finger movements became more difficult. Tasks involving my fingers and thumbs became harder. I began dropping things more frequently. Repetitive computer work became increasingly difficult.

Eventually, I had to confront something I had spent years trying to work around.

My hands weren't simply painful anymore. They were changing what I could safely and sustainably do.

Reduced grip strength and dexterity

"Reduced grip strength" doesn't begin to describe it.

A medical report might say: reduced grip strength, impaired dexterity, difficulty with fine motor tasks, frequent dropping of objects.

Those words are accurate. But they don't tell you what it is like to live with them.

I drop my phone. I drop handbags. I drop plates and break them. I drop pots.

I have had hot water spill onto my chest and burn me because my hands didn't hold what I needed them to hold.

A pot isn't simply a pot anymore. Before picking something up, there can be a calculation: Can I grip this properly? Is it too heavy? Should I use both hands? What happens if I drop it? Sometimes reduced grip isn't merely inconvenient.

Consequences of losing hand function

Sometimes it is dangerous.

There are also consequences of losing hand function that are much harder to talk about.

Going to the toilet can be difficult. My hands don't always allow me to clean myself properly afterwards. Sometimes I have to shower. It is intensely private to admit. But chronic illness isn't only about the things we are comfortable discussing.

Behind clinical descriptions such as grip strength, range of movement, and dexterity is a person who wants to feed herself. Dress herself. Wash herself. Use the bathroom independently. Cook without burning herself. Carry a plate without wondering whether it will end up shattered on the floor.

These aren't insignificant details.

• They are safety.
• They are independence.
• They are dignity.

And then I sit down at a computer.

The grief in losing my physical ability

Not because I have forgotten how to do my job. I haven't.

Not because I have stopped wanting to contribute. I haven't.

My mind still knows how to do the work.

My hands simply cannot keep delivering that knowledge in the way my occupation requires.

There is grief in that.

I haven't lost everything with the loss of the use of my hands

I have also learned that becoming unable to sustainably perform the occupation you have spent decades building does not mean you are incapable of everything.

• I haven't lost every ability.
• I can think.
• I have knowledge.
• I have judgement.
• I have ideas.
• I have experience.

My occupation depends on my hands

But the occupation in which I built that experience depends heavily on the part of my body most severely affected.

Disability can take away your occupation without taking away every ability you possess.

The space between those two things can be enormous.

My experience, judgment, ideas, and desire to contribute did not disappear when my fingers stopped working the way they once did.

No wheelchair for my hands

I keep returning to the words: There is no wheelchair for my hands.

I don't mean that people who use wheelchairs automatically have their disabilities understood. They face barriers and assumptions of their own.

What I mean is that society recognizes certain visible signals of disability.