It's Disability Pride Month!! Let's Talk About POTS!

It's Disability Pride Month!! Let's talk about POTS!

Hello beautiful people. Since it's Disability Pride Month, I wanted to talk about my disability. I have a condition called POTS. It stands for Postural Orthostatic Tachycardia Sydrome, which is a very long name, and you can see why we just say POTS. Essentially, it means that when I change position or stand up, my heart rate gets too high. It is normal for your heart rate to go up when you change positions. But what makes POTS different is it changes too suddenly and much higher than average. The National Institutes of Health defines that a person with POTS has "an increase in heart rate of 30 beats/min or more when moving from a recumbent to a standing position that lasts more than 30 seconds". Which on its own doesn't sound all that bad. I would be a much happier human if that's all it was. However, POTS comes with its own host of symptoms. That swing in heart rate can cause dizziness, lightheadedness, blurred vision, and sometimes fainting. Other symptoms of POTS include:

Exercise intolerance

Headaches

Nausea

Fatigue

Anxiety

Dry mouth

Excess thirst

Leg pain

Blood pooling

Brain Fog

Swollen Extremities

Sleeping problems

Bladder problems

Digestion issues

Tremors

Shortness of breath or chest tightening

Memory issues

Poor temperature regulation

Chronic dehydration

Neuropathic pains

Increased sweating to the extremities

Loss of appetite

Light sensitivity

Dry eyes

Heart palpitations

Chest pain

Cold extremities due to poor blood flow

Heat intolerance

Hypovolemia (low blood volume)

And probably more that I've missed! Doesn't sound all that fun, and trust me, it isn't! POTS is a condition under the larger umbrella of Dysautonomia. There are several different types of dysautonomic conditions, POTS is only one of them. Here are some fun facts about POTS:

POTS effects around 0.2% of the world's population

It is most common in females, 75 to 80% of all patients are female

Though it can be diagnosed at any age, it is most commonly diagnosed between the ages of 15 and 25 (I was 19 when I got diagnosed!)

There is no cure for POTS and it's a chronic illness

Some teenagers will outgrow the condition in their 20s

The average time to diagnosis is 5 years and 11 months (took me almost a year, luckily)

According to Dysautonomia International, 25% of POTS patients are so disabled they cannot work or attend school

There is no singular cause for POTS, and many patients will likely not know what caused their condition

Research on POTS is incredibly sparse, making advocacy, treatment, and diagnosis even harder

The usual recommended treatment is increased fluid intake, increasing salt intake, wearing compression stockings, raising the head of the bed to conserve blood volume, reclined exercises like rowing, recumbent bicycle, or swimming, and a healthy diet

While there is no FDA approved medication for POTS, some medications such as beta blockers can be used to aid the condition

Though the heart is directly involved, POTS is not technically a heart condition. It is technically a nervous system disorder stemming from the autonomic nervous system

There's lots to be said about POTS! I don't think I could fit it all in one post if I tried. But if you made it this far into the post, thank you for taking the time to learn about it! Awareness is key, and the more people that know about the condition, the better we are. Happy Disability Pride Month!!

I mean like...yes, it's okay to like kids' media regardless of if you're autistic or not. No, of course your sole argument for why it doesn't deserve mockery shouldn't be "but they might be autistic". But I don't think that means we need to or should deny that there is somewhat of a connection, or that this mockery is often rooted in ableism.

Like the autistic people who stick to or fixate on children's media are not some made up stereotype, that's a real thing and there are various reasons that can happen, such as those stories being easier to understand socially, cartoon faces having more exaggerated expressions, etc. And then there are things like comorbid intellectual disabilities and other developmental disorders.

I cannot tell you how many teenagers I knew in special ed loved media that was aimed at much younger audiences. Way more than in typical mainstream classes. That's not an accident. And it's not something we should shy away from accepting or try to distance ourselves from. Like yeah of course, it's not all of us. But if you want to seriously discuss an issue of judging people for not acting how they're expected to with regards to their age, you can't deny the role of ableism against developmental disorders.

Our system is broken.  It is cruel.  It is dehumanizing, degrading, and it’s vile nature is so, so unnecessary.

We need universal healthcare today in America.  We needed it 40 years ago.  It’s cheaper, it’s simpler, it’s more efficient, it’s more effective and it is so, so, so much less cruel than what we have.

Additional sources/references:

Universal Healthcare Cost in America would be cheaper by trillions of dollars

The US has worse life expectancies than socialized healthcare countries

We have worse generalized healthcare results

We have the most expensive care

Our system is so cruel and unique that doctors from other countries literally can’t believe what happens here

I can’t tell you where or how to activate to help solve this.  There are politicians, groups, and activists pushing for this in so many ways.  I can tell you when, though.

Now.

i feel like we dont talk enough about how distressing and disturbing memory loss issues are. forgetting what you were talking about halfway through a sentence, putting something down and instantly forgetting where you put it. having to reread one paragraph over and over again because by the time youve moved onto the next sentence you dont remember what the one before it said. always doubting if your memories of things are real, not being able to remember important life events.

its so incredibly scary, it feels like your mind is constantly playing tricks on you and you start to doubt whats real and what isnt.

“i forgot” is treated like a lazy excuse when it’s genuinely such a big issue for so many people.

The daily meme

Why the fuck does this dmv not have chairs (i know some dmvs do but in my experience they only gave them to seniors and people with children and those with visible disabilities and I don’t bring my mobility aids cause I’m worried probably for no reason of being some kind of denied or poorly treated or something idk ). I have been standing for an hour and I am in pain but I know if I sit on the ground I probably won’t be able to get up. gahhhh. also the accessible entrance is literally so far from the main entrance like wtf. Also also it’s hot in here cause if so many goddamn people

Why are spaces that are meant to accommodate so many different types of people so damn inaccessible