During my final semester of college, when I was 24, I became ill with many strange, inexplicable symptoms. I was dizzy, my blood pressure was low, my left ear rang uncontrollably, my feet turned strange colors and burned as if on fire, and my eyes felt bone dry. I struggled with memory and cognition, was sensitive to light, and felt weak and exhausted.

Fighting for Answers

These symptoms went on for nine years, as I kept visiting doctors who told me nothing was wrong. Then, suddenly, I developed chest pains and pressure, a racing heart, and trouble breathing. I went to the emergency room three times at two different hospitals in a single week, but doctors kept chalking my symptoms up to anxiety; I had to beg a doctor to admit me, but even after running tests in the hospital, the doctor said it was anxiety. After I was discharged, I continued to visit doctors.

Finally, while doing what is called a “stress echo test,” in which doctors monitor heart rate during periods of exercise and rest, I realized that my symptoms eased when I was lying down. I mentioned this to the cardiologist who was conducting the test; he decided I had orthostatic hypotension—a form of low blood pressure that occurs when you stand up after sitting or lying down—and sent me away with a prescription.

After researching “orthostatic hypotension,” I understood my problem was related to the autonomic nervous system, which controls heart rate, blood pressure, blood vessel constriction and contraction, temperature regulation, digestion, and breathing.

A Diagnosis, at Last

I needed a neurologist, not a cardiologist. After one visit with an autonomic neurologist, I finally got a diagnosis: I did not have orthostatic hypotension, but postural orthostatic tachycardia syndrome (POTS).

Approximately 50 percent of POTS patients also have underlying small fiber neuropathy, and I happen to fall into that category. Sensory neuropathy, with which I was diagnosed at age 38, accounts for the burning sensation in my feet, and autonomic neuropathy is the likely cause of most of my other symptoms. But despite rounds and rounds of additional testing, no cause for the neuropathy has been identified, so I received the dreaded “idiopathic” label.

Another Piece of the Puzzle

A few years later, when I was 41, I was diagnosed with a genetic connective tissue disorder called Ehlers-Danlos Syndrome, Hypermobility Type (EDS-HT). One of the hallmark signs is joint hypermobility, but there are many other signs and symptoms, too.

In total, it took 17 years for doctors to arrive at these diagnoses, and yet my conditions aren’t so rare. POTS affects between 1 and 3 million Americans, while an estimated 1 in 10,000 to 15,000 people have EDS-HT, although researchers believe the prevalence of EDS-HT may be much higher. So why did it take so long?

Raising Awareness

POTS was identified and named less than 25 years ago and word is spreading slowly among medical professionals. EDS was identified in the early 20th century, but many doctors aren’t familiar with it, or only associate it with extreme cases of stretchy skin and severe joint dislocations. It can present more subtly and doctors familiar with the various signs and symptoms should be able to recognize it, but most don’t think to look for it. 

Unfortunately, these conditions have no cure, and I still struggle with symptoms and feelings of sadness, frustration, and helplessness. One thing that makes me feel better is to get involved in my own cause.

Preaching to the Public

I want more doctors to think about autonomic nervous system and connective tissue disorders so patients don’t have to wait years for a diagnosis as I did. I want the public to know about these conditions so people can identify them in themselves or loved ones. It’s so difficult to have a medical condition no one has heard of. You’re met with blank stares and confused looks—or worse, disbelief.

I’m not well enough to take on the world, but I’ve found a few small things I can do to raise awareness at my own pace and from the comfort of my own home. I send out brochures to help educate doctors about POTS; I participate in fundraisers and online awareness projects; I donate money when I can; I’ve written to my government representatives and the FDA to ask for their support; and I reach out to the media, asking for articles to promote awareness.

Get Involved

Reach out to organizations dedicated to your disease, such as Dysautonomia International, DINET (Dysautonomia Information Network), the Ehlers-Danlos National Foundation, and the Foundation for Peripheral Neuropathy. I have learned so much from these organizations and have been given opportunities to get involved without even having to leave the house.

Every day I see regular people doing amazing things to help our cause. I encourage you to take back your power and get involved in whatever capacity you can. It might help you feel better.