The Greek Comedy (and Tragedy) of Life With POTS
There I was, in a doctors office, hanging on to the last shred of hope I had that we’d figure out a treatment plan and a way forward after a number of previous treatment plans failed. The medical assistant comes in, takes my blood pressure and points out that my heart rate is over 120 beats per minute.
“Oh, geez, we need to get an EKG.”
“No, we don’t. I have POTS, this is my normal functioning level.”
She headed out and got the machine anyways; directing me to lay down. If you have POTS, you know exactly where this is headed. She placed the leads on my chest and stood there puzzled over what the machine was telling her.
“There must be something wrong with the machine, it says your heart rate is 72.”
“There is nothing wrong with the machine. That’s normal, I have POTS.”
She stood there and stared at me. It became obvious at that point that she had no idea what POTS is or what it means. She walked out, telling me the doctor would be in soon. After being awarded my ten thousandth EKG, turns out I still have POTS.
I wish I could say this is the first time I have dealt with that situation — a situation in which I have told a medical professional that what they are seeing is normal and the reason for it, only to have them ignore me and go about treating me like I have no idea what I am talking about. Am I coming off as hysterical? Did I say something wrong? Am I actually invisible and not just dealing with an invisible illness? Hello? Is this thing on?
I can only laugh, because if I’m not laughing, I’m crying.
Many POTS patients spend an astronomical amount of time explaining to people that we are not “crazy;” begging for someone in the medical community to please listen to us. We often receive little empathy from family, coworkers, friends, and pretty much everyone in our lives because we don’t look sick and therefore must not actually be sick. We still smile, laugh, and try hard to be present in our lives and not allow POTS symptoms to suck the joy out of everything.
The thing is, sometimes it’s hard to not laugh. In its own way, POTS has built-in comedy.
“You’re smoking pot?! Isn’t that illegal in your state?”
“Yup! I have an illness that is illegal in this state, someone should definitely come confiscate it.”
“Are you drunk?”
“Hard to say, I haven’t drank alcohol in years, but I do appear to be exhibiting all of the symptoms of intoxication. Dizziness, nausea/vomiting, confusion, and sometimes I pass out. You decide.”
“You look fantastic!”
“Thank goodness for that, if I looked like I feel it would be horrifying.”
If medical assistants, nurses, and yes, even some physicians, would just stop and actually listen, they would hear just how desperate some of us are to feel better. How our quality of life is slowly being stripped away piece by piece. How I gave up a stellar graduate research position at a University I desperately wanted to be at and had worked my butt off, through pain and severe brain fog, to obtain the opportunity. How isolating it can be to not feel well but look completely healthy. How the simple act of not being heard can actually be quite traumatizing. How exhausting it is to have to fight against being labeled as a hypochondriac when there is truly a physiological issue going on. These are the great tragedies of postural orthostatic tachycardia syndrome — that not only are we not always seen, we are not always heard.
The unsettling part is that these people should have empathy. They should understand that sick people don’t always look sick. They should listen to the nuances of patients to make sure they don’t miss something we aren’t exactly saying out loud. They should ask questions for clarity.
In the book “The Lost Art of Healing: Practicing Compassion in Medicine” by Bernard Lown, MD the famed Nobel Peace Prize winning cardiologist and great mind behind the DC defibrillator and cardioverter, he writes 368 pages of where medicine has gone wrong in recent years. Recent years being 20 years ago. In 2018 when Dr. Lown was a patient himself at a Boston-area hospital, an intern was caring for him and later wrote an article for the New York Times about that experience titled, “Doctors, Revolt!”
In that article he writes, “The biomedical sciences had begun to dominate our conception of health care,” and he warned that “healing is replaced with treating, caring is supplanted by managing, and the art of listening is taken over by technological procedures.”
On top of POTS, in 2014 I was diagnosed with sarcoidosis. By the time we even got close to a POTS diagnosis I was so exhausted from the amount of testing I had gone through (on top of also having an adverse reaction to medications and testing for that), that the thought of more testing was met with a lot of resistance on my part. After my first tilt table test, which was conclusive for POTS, I had to complete two more at an autonomic clinic. It sounds easy to an outsider, you just lay on a table and then it tilts up, no biggie (how relaxing!) But as a patient, I have to wake up, drive myself to an appointment, sit in a waiting room, do the test, hope I don’t vomit during the test, sweat pours out of me like a faucet, get a migraine, and then I have to find my car, and drive myself home. All of which uses up very valuable energy that I need to do everyday tasks.
In addition to the tilt table test, people who may have POTS undergo QSART, Valsalva, endless labs, blood volume testing, and about a zillion other tests. At no point in any of this does someone say, “How do you feel?” other than the tilt table tech who asks every two minutes or so if you are experiencing any symptoms, but is not concerned with the fact that you might start crying from sheer frustration in the process, nor do they usually genuinely listen to your concerns.
I just want to make dinner for my family without my heart racing and severe fatigue setting in. I just want to go camping or on a vacation. I just want to go to work. I just want to be able to clean my house without outside help. I just want to go to my daughter’s chorus concert at 7 p.m. without feeling the pull of fatigue that is so severe I end up not being able to go. I want to remember what croutons, couches, sidewalks are called without having to play charades with my family because of brain fog. I want to wake up in the morning feeling like I actually slept. I want to go to yoga and not feel nervous about being dizzy and falling over. I want to live. I desperately want to be a productive member of society.
In order to achieve all of those, I need medicine to listen to me and get to know me. I constantly question what to tell physicians because I’m scared they won’t take me seriously, so I censor myself (which is counterintuitive, I know). I know they only have 20 minutes for an appointment, so I carefully try to plan what I need to achieve during that 20 minutes. That means that only one complaint is met for each appointment and the full scope of the problem is never seen. I’m not a complainer. I’m at a 5 on on the pain scale daily and won’t start speaking up until I’m at a solid 7 and it’s really starting to bother me. I went 8 days with pancreatitis at home because I was scared the Emergency Department nurses would sigh and lecture me about how I am taking up valuable space from a patient who actually needs care.
But my concerns are not unfounded. I use to work in an Emergency Department and have heard some of the deplorable things medical professionals say about their patients. We had “frequent flyers,” homeless men or women that also had drug or alcohol addictions, who had nowhere to go. We had mothers who would bring in children with common colds, positive their child was going to die, because they just didn’t know what to do.
Patients in an ED are triaged on the severity of their complaint. When people are in pain, they see it as an emergency and it is difficult to grasp how they are not seen first because that pain is real. However, when the medical community shames these patients for seeking care, we can create a culture where healers no longer have compassion or empathy for the humans they treat, but instead absolute disgust for those who seek care. In the back of my head there is a constant, “Are they saying those deplorable things about me?”
I know for fact this is not just me. I know many people with invisible illness struggle with being taken seriously by providers and other professionals as well as their closest family and friends. We struggle with being heard; we struggle with being seen. We can laugh at the absurdity of the illness itself. We can find joy and comedy in the things that bother us. However, at the end of the day, medicine needs to listen because we are depending on you to hear us. We are depending on you to work with us to come up with a plan that works for us.
Getty image by FerGregory.