It’s Not Patience, It’s Exhaustion
My husband Richard knows my true nature. I try to hide it and improve upon it, but the truth is that I am impatient.
People mistake my exhaustion for patience. They see me calmly interacting with people mistreating me due to my illness and disability and falsely believe that I’m being patient with them. But it is not true. It has happened so often in my life that I am exhausted. Not every fight is worth the effort.
Overwhelmed and exhausted
People with rheumatoid arthritis have so many things we are juggling. We’re trying to keep up with our many, never-ending medical appointments. We’re trying to maintain our health with treatments, exercise, healthy eating, mindfulness, and so on. We’re trying to have the energy to do our chores like grocery shopping, cooking, and cleaning. We’re just plain stretched.
I'm not as patient as I appear
So, we may be stretching ourselves too far when we encounter insensitive medical professionals, questions from intrusive strangers, or ablest assumptions about our requests for reasonable accommodations. We may be too exhausted.
For me, this either comes out in one of 2 ways:
- Rage. As in, "I can’t believe you don’t have an accessible table for the dinner reservation I made weeks ago" and I storm out and leave.
- Or it may come across as lackluster emotion. For example, "can you please find me an accessible table as I made this reservation weeks ago?"
Instead, I practice endurance
It’s no longer about practicing patience. It’s about endurance. Can I outlast whatever is exhausting me at the moment, which may mean the entirety of life in this ableist society? Sometimes I don’t feel like I’m living my life so much as trying to prove that I will endure (as exhausted as I may be) all the ridiculous things I have to to just live a regular existence.
For example, accessible transportation options in my city have devolved to the next-to-impossible state. The trains aren’t running properly and are too dangerous to ride as a wheelchair user when I know they have no safe, accessible evacuation plan. The buses don’t seem to adhere to a schedule and, sometimes, don’t show at all. And I’m lucky if an accessible cab shows up despite booking weeks in advance. Just getting to a doctor’s appointment feels exhausting because, in actuality, it is.
Picking my battles
For a while, I mistakenly thought I was practicing patience through these many life challenges with RA and disabilities. But I realized that I am not. I am just so exhausted I can’t fight all the time. It’s not about being understanding or kind. I can’t muster the energy to fight about everything that should be better, easier, or at least not so hard.
I’ve had to pick my battles, and these things haven’t made the list. I’m too busy fighting other issues, tilting at other windmills. I’ve had to prioritize my body and health first, then a short list of issues I feel I can no longer endure. These are the things where my patience is so worn out that I cannot live with the situations anymore. I don’t have time to fight everything, so the rest get the face of my exhaustion—the sigh of ‘now what’ or ‘not this again’ or ‘can’t you get your stuff together?’ Because I just can’t anymore.
What I wish others knew
So, if you encounter someone with RA (or another chronic condition or disability- the exhaustion these days is widespread) who just sighs at you, perhaps you could ask why they are exhausted and what can be done to make it better. I have to be honest that sometimes it feels like very few other people care to help, and it would be nice if they did just a bit more.
On average, how many times per month do you (or your caretaker) go to the pharmacy?
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