Back in 2008, no doctors could figure out what was wrong with me. Pots were just things my family cooked with and nonprofit organizations like Dysautonomia International did not exist. It took two and a half years and twenty-five doctors until one incredible cardiologist turned to me and said, “I know what you have.”
I don’t know about you, but once I was diagnosed with something incurable, I went straight to the internet. However, there have been so many things over the past ten years that websites like WebMD could never have prepared me for.
1. Getting diagnosed is only half the battle.
The other half is dealing with people who still don’t believe you’re sick. POTS is what’s known as an invisible illness, which means you can feel like crap and nobody will notice because you look healthy on the outside. I’ve lost count of the amount of times I’ve been told, “Well, ya look great!” in response to my explanation of how awful I feel. Somebody engrave, “Well, she looked great!” on my tombstone.
2. “Where’s the bathroom?”
Bladder dysfunction: a very real symptom that nobody ever talks about. Having POTS means scoping out the location of the bathroom as soon as you walk into an unfamiliar place.
3. POTS can be isolating.
In my 10+ years of experience, healthy people often don’t know how to handle illnesses like POTS. I’ve been asked if I’m still sick, like my chronic illnesses with no known cures magically disappeared since the last time we spoke.
4. Shame? Never heard of her.
If I stand for too long, all of my blood will gather at my feet instead of circulating back up to the rest of my body. If I don’t get horizontal fast, my body’s going to do it for me. There have been more than a few times where I’ve had to lay down on the floor in the middle of a crowded restaurant. Move along, people, nothing to see here!
5. The words no salt added hurt my soul.
Have you noticed that everything seems to be low sodium these days? POTS patients actually need more salt, not less. Thankfully my dad and I have a compromise: he buys low sodium chips for himself and a regular bag for me!
6. Learn the art of the “smile and nod”.
Sometimes I wish real life interactions came with an FAQ section.
I get people just want to help us feel better, but if the answer were as simple as cutting out gluten or trying yoga don’t you think we would have done it already? I actually have tried both of those suggestions, as well as essential oils, exercise, meditation, “pushing through it,” and so on. Hey, maybe those options have helped somebody with POTS, but not this somebody.
Lately I just smile, nod, and change the subject to whatever cute thing my Yorkie did that day.
7. No, not that kind of pot.
In high school, my friends would ask me why I was absent so often. After years of not knowing what was going on with my body, I was proud to tell them it was because of something called “POTS Syndrome”. Of course, they only heard “pot syndrome” and would ask me if they could have some. I had no idea what they were talking about! Why would anyone want to have POTS?
It was later explained to me that they thought I just smoked a ton of weed.
To quote my cardiologist on the day he diagnosed me, “You have POTS. It stands for Postural Orthostatic Tachycardia Syndrome. And it sucks.”
POTS is a type of Dysautonomia. Dysautonomia is the umbrella term for medical conditions that cause a malfunction of the Autonomic Nervous System. Your Autonomic Nervous System controls “automatic” functions of the body like heart rate, blood pressure, digestion, kidney function, eye pupil dilation and constriction, and temperature control.
Danielle DiBona is a guest writer who blogs about her many chronic illnesses at chronicallydannie.wordpress.com.