Thread by @broadwaybabyto

Katie Ledscky wins Gold with POTS - and now those of us with POTS are being told we shouldn’t be “so disabled”.

I’m proud of what she’s accomplished while dealing with this dreadful condition - but concerned about how it may impact perception of our level of function 🧵 /1

POTS is a type of dysautonomia - which literally means a malfunction of the autonomic nervous system. This is the system that controls unconscious processes in the body - heart rate, blood pressure, temperature, breathing, digestion, blood flow etc. /2

If it’s something necessary to sustain life - and you don’t have to consciously think about it - it’s controlled by your autonomic nervous system.

When this system malfunctions - it can create profound disability. Some patients are left bedbound or in a wheelchair. /3

Personally my POTS was relatively well managed with salt, compression stockings, fluids and pacing for the first few years.

I could still be independent and relatively physically active - and even successfully completely a cardiac rehab program to strengthen my legs. /4

Unfortunately a series of setbacks - including a bad viral infection and a terrible episode of anaphylaxis to contrast dye - worsened my dysautonomia and left me mostly bedbound. /5

I can’t properly regulate my temperature anymore. I’m often fevered or hypothermic with no reason. My heart rate is unstable - either tachycardic or bradycardic but never in a normal zone. I’ve developed swallowing issues & am a choking risk. My blood pressure is far too low /6

These issues make getting from my bed to the bathroom a challenge - I certainly wouldn’t be able to compete in sports at ANY level.

This is what’s known as dynamic disability. Your function can (and will) change. You have good days & bad. You may have good & bad years. /7

I hope to gain function back - but right now I would be considered severely disabled. The idea that just because someone with POTS can compete in the Olympics we ALL can do more is patently absurd. /8

It’s worth noting she won the Gold in swimming - which is arguably one of the best forms of exercise for someone with POTS. Being in the water (and horizontal) allows you to exercise without dealing with the dangerous tachycardia many patients have when upright /9

This doesn’t mean it’s been easy for her - but many of us find we can perform better in a pool than we could ever hope to perform on dry land. /10

When she won the Gold I was hoping this would highlight the fact that POTS is not deconditioning - because that incorrect theory plagues many patients. An Olympian is the polar opposite of “deconditioned” and yet she’s still dealing with this illness. /11

I ask healthcare workers to kindly educate themselves on POTS and the other forms of dysautonomia and stop lazily blaming it on “deconditioning”. Many of us were extremely active & fit when we became sick. /12

If we subsequently become deconditioned it’s often due to lack of diagnosis and treatment options. If you’re fainting whenever you stand or try and walk - you would spend most of your day in bed too. These patients aren’t lazy - they need help and treatment. /13

That’s not to say there isn’t value in keeping your body as strong as you can - there absolutely is. I try and do exercises every day from my bed. Ankle pumps, small calf lifts, butt squeezes etc. Even building arm strength will help reduce symptoms. /14

The stronger your muscles are - the better equipped they’ll be to help do the job your blood vessels should do on their own. My body doesn’t send blood back to my head when I stand - it pools in my legs & I faint. Strong legs muscles can help squeeze that blood back up. /15

Lastly - can we agree not to tell chronically ill patients they should be “less disabled.”? It’s ableist, uninformed, cruel and unhelpful.

There will always be someone with our disability who defies odds and expectations - that doesn’t mean we ALL can. /16

We can celebrate Katie’s accomplishments without punching down on patients who can’t do what she can. We should never judge or compare ourselves to others - being sick isn’t a competition. We’re all just trying our best to survive - and sometimes our best is staying in bed. /17

If you’re feeling bad about your level of function - please don’t. Remember the ever changing nature of the human body & of disability. There will be better days. There may also be worse days. Whatever tomorrow brings…You’re doing great. Don’t let anyone tell you otherwise. /end