“It’s my 19th birthday. I awake to unfamiliar surroundings. I see white walls instead of burgundy: the color of my bedroom walls. I can hear my aunt laying in the bed and of our shared room. I then remember – I am not at home. I am in a hotel room in Cleveland. Ohio, 9 hours away from our little house in Marcy, NY. It suddenly hits me I am not in Cleveland for a birthday getaway. I am there because I am being admitted to Cleveland Clinic for autonomic testing at 7:15 a.m.
I quickly shake my aunt lightly to arise her. She stirs and slowly gets up. For the next hour, we both try and ready ourselves for the day ahead. At 7 a.m., we take the hotels shuttle to Cleveland Clinic. I see the logo for Cleveland Clinic as we pull into the parking lot. It begins to sink in, this is definitely not going to see the birthday I had planned. Once I am registered and admitted, we are directed to the third floor where the autonomic lab is located. The receptionist takes my information and said we’ll be called back shortly. Sure enough, 10 minutes later we are called back into one of the exam rooms. The nurse takes my orthostatic vital signs (laying, sitting, and standing) and my medical history. Once she is finished, she says the doctor would be in shortly. After a short wait, the doctor walks into the exam room, customized with a sweet smile and firm (yet gentle) handshake. He sits down at his desk, turns to me, and asks me how I am doing. At first, I am taken aback by this question, as I’ve spent the last 5 years of my life playing (as my aunt put it) ‘musical doctors.’ But there is something about him that makes me unload everything that has been plaguing me since that mid-October morning when I woke up sick (which we now know was mono) and never got better. As he listens to me (and my aunt chiming in every once in a while), he starts typing on his computer keypad but he never takes his eyes off of me. After he listens to me continue to talk, he goes over my extensive medical history and takes into play the vital signs the nurse took just 15 minutes before. Around halfway through, he asks me about my admission to a hospital in Coatesville, PA just 8 months ago.
I remember it like it was yesterday. On June 10, 2014, I was admitted to an inpatient eating disorders unit in the behavioral pavilion in Brandywine Hospital, which was an out-of-state 7-hour drive from home. I had been struggling with bulimia nervosa for 6 years, beginning at age 12, along with self-harm, PTSD, generalized anxiety, and bipolar disorder. The eating disorders unit was a 17-bed unit for men and women, from age 14 and up, who have eating disorders. Even though they tried to make it more ‘homey,’ the unit still smelled and looked like a hospital. Around 4 days into my stay, I fainted while we were lining up to go to the dining hall for lunch. I fell backward but thankfully one of the other patients caught me so I didn’t hit my head on the tiled floor. By the time the nurse came to help me, I was already conscious and laughing because one of the other girls made a joke saying I ‘bounce well’ and I should carry a pillow around with me so I land softly. When the nurse saw me laugh, she gave me this odd look.
Once they got me safely into the unit, the nurse called my aunt, who is a retired RN. My aunt explained I’d been dealing with fainting over the last 5 years and not one doctor found out what was going on. In fact, a lot of the doctors thought I was faking for attention or that I was a hypochondriac. Later that day, a cardiologist from the regular hospital came in and told me I was going to be having some testing done the following day but didn’t fully explain what type of testing. The next morning, I went to the regular hospital and went through several tests, including an echocardiogram, EKG, pulmonary function testing, Holter monitor, and a tilt table test. Laying flat my blood pressure was 112/64. Once I was tilted, my heart rate immediately went up but my blood pressure remained the same.
Around 20 minutes later, I became extremely nauseous, dizzy, shaky, and felt like I was going to pass out. I don’t remember losing consciousness. Everything happened so fast, the next thing I can clearly remember is lying flat. The nurses were pumping IV saline into the IV placed on my hand. They said just before I fainted, my heart rate skyrocketed and my blood pressure dropped so low, the machine couldn’t read it. They said they almost had to call a code due to my vital signs.
It took them a while to get my vitals stabilized but once they did, I was taken back to the EDU. Due to my fainting episodes, I was deemed a ‘fall risk’ and confined to a wheelchair due to safety concerns. The next afternoon, the lead cardiologist came into my room and said they figured out what was going on with my body. She said I had a condition called Postural Orthostatic Tachycardia Syndrome (POTS). She didn’t go into much detail but prescribed a beta-blocker to help with the tachycardia I’d been experiencing. Around 2 days later, I had my regular meeting with the unit’s psychiatrist. The regular psychiatrist (who was amazing) was out sick so we had a different psychiatrist form fill in for him. As I was sitting there, in a wheelchair, he said I was a hypochondriac and was faking. He also said, ‘You must be enjoying the attention you’re receiving,’ referring to the day I fainted because I had laughed when the other patient made a joke. He said I needed to stop this game and admit there was nothing wrong with me.
I left his office in tears and immediately called my aunt, who called the charge nurse and asked to speak to him. The nurse said he does that with all of the patients and everyone hates him. The nurse gladly gave my aunt his number and told him off. She told him I laugh, smile, or smirk after I have these events because I am embarrassed, NOT because I’m enjoying the attention. She demanded he properly apologize to me (which he never did) and if he did this again, she’d be calling his boss to file a complaint. 6 days later, after being in the EDU for 17 days, my insurance refused to pay for more inpatient treatment. I was discharged and sent home.
I am no longer in the EDU. I am sitting on the exam table in Cleveland Clinic, explaining the entire experience to the doctor. I look at the doctor and see sympathy and compassion in his eyes. Then, instead of dismissing my symptoms as ‘psychiatric’ as numerous doctors had done before him, he says something I am not expecting at all: ‘I am so sorry you had to go through all of that. I am so sorry you were treated that way and that you’ve experienced mistreatment in the medical community. But I want you to know none of this is in your head nor is it your fault. I have seen so many patients like yourself who have been treated the same way and it’s not appropriate or fair. What you are experiencing is real and in no way can you control it. The symptoms you are experiencing are not in your head nor are they fabricated for attention. I know you haven’t heard this from many medical professionals but I believe you and I will do everything I can to help you.’
As he says those words, my aunt and I fight back tears. Finally, someone is listening to us. We continue to go over the rest of my medical history and my symptoms. After a while, he says something I’ve been dreaming of hearing over the last 5 years. ‘I agree with the cardiologist in Brandywine. I am officially diagnosing you with Postural Orthostatic Tachycardia Syndrome (POTS).’ He explains that even though he has already given me an official diagnosis, he wants to go ahead with the autonomic testing to see the level of severity my POTS is. After spending over an hour with him, he tells me to stay strong and he is recommending we come back in a month for the test results. Over the next 4 hours, I undergo a variety of tests including echocardiogram, tilt table test, QSART resting, sweat test, bloodwork, and an EKG. He also has me fitted for a 3-day Holter monitor. After the testing is done, we stay in a hotel for 3 days and then take the 9-hour train ride home. A month later, we go back and get the results of the tests and bloodwork. He diagnoses me with hypovolemia (not enough plasma in the blood – low blood volume) and says my QSART testing came back positive for neuropathy. He also diagnoses me with Raynaud’s Phenomenon (poor circulation in the extremities). He wanted to see me back in 6 months but unfortunately, my grandmother passed away 2 weeks before my appointment with the autonomic neurologist so I never got to go back.
It has been 5 years since my POTS diagnosis. I have since been diagnosed with Ehlers Danlos Syndrome (EDS) and possible Mast Cell Activation Syndrome (MCAS). I am now 24 and live at home with my aunt and uncle. I am disabled and can’t work, drive, or (currently) attend college. I am what my cardiologist calls ‘partially homebound.’ I am dependent on a wheelchair or walker (for the most part) to get around. I can’t live alone or be alone because I’ve also developed seizure-like events after I faint that mimic tonic-clonic (grand-mal) seizures. I also have a port in my chest and receive IV saline therapy through my port 3 days a week at an outpatient infusion center for my POTS.
I am pleased to say I have been eating disorder and self-harm free since May 4th, 2016 — almost 4 years.
While battling bulimia was one of the hardest things I’ve experienced, it was also what led me to my diagnosis. If I had never developed bulimia, I never would have gone to Brandywine. If I hadn’t fainted while an inpatient in the EDU, I never would have been diagnosed (informally) with POTS. If I hadn’t been told I had POTS, I never would have gone to the Cleveland Clinic and gotten my official diagnosis of POTS.
In some really odd way, it’s like my bulimia saved me. If I hadn’t developed bulimia and gone to the EDU at Brandywine hospital – who knows where I’d be? I now write poetry as an outlet and have had 3 of my poems published and was nominated for the Rising Star Award at Dysautonomia Support Network’s Patient’s Choice Awards 2019. I have always wanted to study psychology and become a social worker or therapist. However, since my health is rapidly declining, I now want to take a creative writing class and maybe study literature when my health is more under control.
My eating disorder may have been a horrible thing to experience and I am still in recovery. But if I had never developed the deadly condition, I never would have found out what was wrong with me. Honestly, it was a blessing in disguise.
If anyone is struggling with an eating disorder, self-harm, or mental illness – don’t give up hope. Times may be tough and you may want to give up but you have to keep fighting. If you give up, you let your illness win. There is hope. Recovery is possible.
And for those seeking a diagnosis of any illness, listen to your gut. You are your best advocate. I know the journey to diagnosis is very hard – but try not to give in to the fight. Once you’re in a rut, it’s hard to get out of it. Stay strong.”
This story was submitted to Love What Matters by Hannah Waldron. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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