Thread by @colocha_rachel

Something I think is super obvious to #pwME (and maybe ME clinicians or researchers) but not to the rest of the people around us is that often we can Do The Thing.

Once.

We can Do The Thing once but we can’t repeat Doing The Thing on an ongoing/recurring basis.

Some examples:

I showered today. I didn’t even crash much yet.

But I can’t maintain a daily or even weekly shower routine.

#MEcfs

I could spend an hour responding to messages and emails today and probably have only a minor crash mostly resolved with a nap.

But I couldn’t spend an hour responding to messages or emails every day (like, for example, how I would be expected to function at a job).

On an average health day, I have the theoretical capacity to leave the house for a small trip (post office, gas station) pretty often.

But I don’t have the capacity to leave the house even for small trips multiple days in a row.

I can’t replicate Doing The Thing day after day.

I can read. But not every day in a row.

I can garden (10-15 minutes 2x a day). But not every day in a row.

I can get to a medical appointment or take a phone call or do a life admin or sweep one room. But I can’t keep doing it.

I think this is more significant than we talk about (beyond research and patient circles) because so much of how we define disability is “can you Do The Thing?” in a very discrete way. So #pwME are not seen as disabled as we are- because no one asks about replicability over time.

The guy who did my neuropsych eval last year for SSDI wanted to know can I dress myself, can I shower, can I drive?

Yes. I can*.

*Once a month or once a week or once with many days recovery after.

But the consideration is based only on the yes or the no.

And this rubs up against how other people with different kinds of disability are determined disabled.

Someone who has paralysis and *literally* can’t maneuver their shirt over their head can say “no I can’t dress myself” in a discrete way.

Someone who has perhaps a brain injury or dementia *literally* can’t read written words anymore. They can discretely answer (or show through testing) “no” to “can this applicant follow written directions”.

There’s no room for “yes, but” on those disability assessments.

With those kinds of yes or no questions that are only tested once, I’ll never be assessed as disabled as I am.

And it’s also why my friends and family who don’t live with me (and even those who do live with me to some extent) can’t understand the impairment fully.

My doctors certainly don’t understand this and become irritated or skeptical when I express pessimism about their suggestions of physical therapy, talk therapy, OT.

I can’t go to an appointment every single week, not even virtually, in a recurring fashion common with therapy.

How do I explain to the dentist that I need them to figure out how to get as much work done in 1-2 appointments even though I *know* I need significant dental work.

I can’t just come every 2 weeks for another couple fillings and do that work over 4-8 visits or whatever.

People who see me twice a year think I look great! They’re baffled what I mean when i say I’m disabled.

The neurologist I met *once* in one of the two post-Covid clinics I’m being followed by said “you don’t sound tired. you don’t look tired in your face like some people do”.

As if #pwME don’t rally every single energy resource to make it to the super important family event or the super important specialty medical appointment and then spend days or weeks or months in bed to Do The Thing.

Wanted to add this reply to the thread because its a huge part of the calculus:

We can’t replicate activities multiple days in a row & we also usually can’t do more than one of these activities on a given day.

Showering can’t happen the same day as an appointment, for example.

https://twitter.com/dualiejulie/status/1664422010565402626