The High Cost Of Using My Hands

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.

My disability isn't always visible

My hands don't have an equivalent signal that tells someone what their appearance actually means functionally.

Yes, you can see that my hands are deformed.

But there is nothing that immediately communicates: These hands cannot safely and sustainably do everything you assume hands can do.

There is no gauge showing how much function I have available today. Nothing showing how quickly repetitive activity is consuming it. Nothing telling you what I may have to give up tonight because I used too much of my capacity this afternoon.

The cost of using my hands

This is the hidden part of my disability.

Not the appearance of my hands. The cost of using them.

For years, strength meant getting things done. Ignore the pain. Finish the presentation. Answer the emails. Meet the deadline. Keep going.

Redefining what strength means

I don't define strength that way anymore.

• Sometimes strength is recognizing a limit before your body forces you to recognize it.
• Sometimes it is asking for help.
• Sometimes it is saying: Yes, I can do this. But I cannot safely and sustainably keep doing it.
• Sometimes it means protecting enough physical capacity to still have a life outside work.

And sometimes it means accepting that the occupation you spent decades building may no longer be physically possible.

That isn't giving up.

The difference between facing the limitations and giving up

It is facing something you wish wasn't true.

I don't want pity for what psoriatic arthritis has done to my hands. I want understanding. I want people to understand that completing something doesn't tell you what completing it cost.

And I want other people living with psoriatic arthritis to know that the things we rarely talk about matter too.

These things matter

• The plate you dropped.
• The pot that became too heavy.
• The phone that slipped from your hand.
• The burn nobody knew about.
• The bathroom routine you had to change.
• The meal you didn't prepare because your hands had already done enough that day.
• The work you managed to complete even though nobody saw what completing it cost you.
• The exhaustion of explaining yourself to one more person.
• The report that describes one part of you but cannot possibly describe your whole life.

These things count. They are part of living with this disease.

The reality of living with PsA

My hands are visibly deformed, so my disability isn't completely invisible. But so much of what those hands mean for my life remains unseen.

There is no wheelchair for my hands.

There is no gauge showing how much function remains. And there is no single report capable of describing what it costs to live an entire life through them.

My hands have changed. My life has had to change with them.

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

You can see my hands.

But seeing my hands is not the same as understanding what it is like to live in them.