Remember when people would ask you what superpower you would choose? I always chose invisibility. You could sneak on planes. You could be in a room and listen without being noticed. You could appear to teleport. You could give the illusion of telekinesis. I felt like it was the most versatile option. The loophole of superpowers if you will because you could do a bit of each technically. But now, here I find myself with a sense of invisibility. It isn’t as foolproof as I once thought. I wish I could pull a Harry Potter and uncloak my illness but I can’t. The closest I can come is fainting or allowing blood to pool in my legs causing them to turn ugly colors with bulging veins even The Rock’s biceps would aspire to have. Not super into that idea. Doesn’t really match my *aesthetic*. So hard pass on the reveals.
If I had a dollar for everytime someone said, “You don’t look sick” I wouldn’t feel nearly as bad that I can’t work right now. C
oming in at a close second is, “are you better?” Although it comes from the kindest of places, I am chronically ill. The general theme is that I will still be sick….chronically if you will…even if you wait a full day or a week to ask. “How is today going?” or “how are you feeling?” is significantly better. The last thing I want to do is be like, “Ummm yeah no, shocking, still CHRONICALLY sick looks like it’ll be that way for the foreseeable future. I don’t have the flu. This is a thing. Thanks for asking…”
I am thankful you can’t physically see my illness but not seeing it adds a pressure on top of being ill. At the end of the day, I’m 5’11 with an athletic build. I spent almost all of my life modeling so no one is looking at me and thinking, “that girl can’t walk 10 minutes straight” or “I bet if the waiter drops something she’ll begin crying and fainting”. It’s a catch 22. I don’t want to have to explain my behaviors/survival techniques but I am also happy people don’t give me pity stares.
A big mental hurdle with chronic and invisible illnesses is that you don’t have the time or energy to care what your situation looks like to people. Like me sitting on a bench while having my mom wait in lines or having her carry the heavy things because I can’t strain. It’s those moments while pre-boarding because you’re on the disability list and everyone looking you up and down looking at you like you are a fraud with no respect for the old woman behind you. I always want to turn around and say, “Agnes can flipping stand. She’s just old. If I go behind her slower-than-any-snail-I’ve-ever-owned self, I’ll pass out and delay this flight and it will be an event. So I’m boarding first.” I tried the other way and it DID NOT go well. The lesson here is you never let your pride win and wave off your wheelchair pusher and tell them you can make it on the plane solo. You gotta do what you gotta do but there are tough moments/situations when you’re a healthy looking 24-year-old with an invisible illness.
Another comment I get is from people with the greatest of intentions is when they tell me they are happy I’m out and about because they are worried I’m going to get depressed. Here’s the reality, I have zero control once outside my room. And it is terrifying.
The other day my mom and I had done my swim for the day and we ran into a woman we had done a bible study with years before. She had no idea I was sick. So she asked how to specifically pray for me and asked what I was going through. So while telling her what’s going on with my system, I’m specifically telling her how I struggle with constant high adrenaline, palpitations and high heartbeat (to name a few). She begins praying and not 10 seconds later a loud noise startled me. I opened my eyes and looked over, someone let the air out of something about 30 yards away and it devastated my system. The thing about when my body just goes off is that my thoughts remain the same. So while I have an attack it’s like my thoughts and logic are like “we’ll wait ’til you’re done, crazy” or “oh here we go, this will be a good one” These are actual thoughts I have had while sobbing and getting to a safe position to prevent fainting. Having a sarcastic mind during all of this is a blessing and a curse.
I was able to get out an annoyed, “Oh I’ll kill him” (no idea who the guy is) before I began sobbing uncontrollably and then had to lay down because my heart rate went up by more than 30 bpm and my blood pressure plummeted. My mom knew right away I heard a sound so she was communicating to the woman who, at this point, was very confused and didn’t even hear the noise. This poor woman who was just made aware of my condition is now SEEING it. My thoughts came through with a, “well I guess she freaking knows what’s up now. Well done.” My body took about 15 minutes to somewhat recover. On top of it all, I cried my contact out which was a whole other issue….. It took an additional 10 minutes for my heart to get below 100. Something people do not realize about HyperPOTS, is you’re essentially on the verge of an attack at all times. It is one of the most debilitating and constricting symptoms. The moment I step into public, anything (literally the sound of air) can cause an attack and I have no control over it. There is no system override.
That’s just where my body is right now.
Every time I leave my room, I’m at risk of having an attack. This is all on top of my normal and prevalent symptoms, so not ideal.
There is no set medication for someone who has POTS. There are just families of drugs that we try. Earlier this week and toward the end of last week we have been corresponding with my Autonomic Specialist but it turns out….due to my latest beta blocker reaction, combined with my lab results, I am no longer a candidate for any of the medications for those with POTS. Turns out my resting heart rate and blood pressure are too low naturally for any of the medications doctors prescribe for POTS.
Translation: Buckle Up Buttercup.
We chalked it up to change of environment, exhaustion from traveling and being at Mayo all week. Then more recently, I started noticing more and more of my heart recordings were showing blue which means less than 60 bpm. Even at 50, I thought “meh, I’m fine”. It was the 34 bpm recording throughout the day that got me slightly concerned. For future reference, we’ve been told anything under 55 is when you go to the ER…. you live and you learn and I’m fine. After discussing with my doctor from Mayo, we decided to stop the beta blockers altogether. It is bittersweet because although I feel like my regular sick self instead of barely alive, beta blockers are the main treatment for POTS.
potsiemouth 