“You no longer meet the criteria for a diagnosis of POTS (postural orthostatic tachycardia syndrome).”

To most people, those words would be a cause for joy. It is a huge achievement to no longer have a medical condition. To not be “unwell” anymore. Surely a celebration is in order, no? A big party, or at least a nice lunch or self-congratulatory trip to the shops for a little treat.

Perhaps not. Perhaps a celebration isn’t in order, because it leaves some of us with more questions than answers. Most people with chronic illness wish for answers more than anything — a diagnosis, management of our symptoms, treatment and support. Above all, we seek recognition that we have a serious medical condition and have to adjust our lives to deal with the symptoms we face each day.

Being “undiagnosed” with POTS has brought me both joy and fear. The joy is immense. It would seem the various lifestyle changes I made and the hard work I put in are paying off. Perhaps the time I spent using my pedals at home for a few minutes at a time when I was at my most ill made a difference. Maybe the laps around the park I still continue to run, and the pink Himalayan salt I still sprinkle with abandon on every meal did some good. Or perhaps this isn’t the case at all, and I am just extremely fortunate that for some reason my autonomic system decided to behave itself a little better. I will never know the answer to this for sure; all I know is that focusing on my health can only have done me good.

While I am extremely happy to no longer meet the diagnostic criteria for POTS, being “un-diagnosed” brings a great deal of confusion. One day you are “unwell” and the next, who knows? Are you “well” again? Are you “half-well?” How do you explain this strange situation? How do you identify yourself as a person with chronic illness?

Getting a label for your medical condition can be comforting when you have lived with unexplained symptoms for a long time. A diagnosis gives an explanation for the pain and fatigue, and the mystery has been solved. Getting a POTS diagnosis made my symptoms feel less frightening. There wasn’t an ominous, unknown cause for my health status. It was a largely recognized, defined and known condition to doctors and nurses — although more awareness is definitely needed!

With this “un-diagnosis,” the mystery only comes alive again. I am not symptom-free by any means. I go light-headed if I stand up too fast, my heart races when I walk, I have chest tightness, chronic headache and migraine and a whole bunch of other issues. So doubt re-emerges, and with it fear and trepidation over any new flare-up of symptoms. Is the condition back? Is it a new condition?

In the medical world, it is equally complex to be a patient when you are “un-diagnosed.” One day you are “unwell” in the eyes of the medical profession, the next day you are “well.” This oversimplifies it, of course, but I feel as though I have been left in  medical limbo. It is clear that I still have autonomic issues. In fact, the numbers from recent tests show a slight worsening of this. Yet I am not a “POTS patient” anymore. I have been discharged from one of the clinics that once treated me. I don’t carry the medical label of “POTS” to declare to other doctors when they assess all my other conditions. Instead, I have to speak of a more confusing reality. “Well, I have autonomic dysfunction, characterized by sinus tachycardia and orthostatic hypotension.” Not quite as clear-cut, is it?

Some doctors, my cardiologist included, look at the whole person when they assess health. They understand the nuances of chronic illness and the “limbo” some people live in, experiencing symptoms but the test results are not quite problematic enough to meet a diagnosis. Not quite enough to be assigned the medical label of a condition. Those doctors, as one of mine does, continue to treat you as is appropriate. They are mindful that conditions can wax and wane, and may go into remission for a time only to re-appear and perhaps be more problematic than before.

However, speaking from personal experience, it is clear some doctors do not take a view of their patients in this nuanced way. Instead, numbers become all-important. Test results, those numbers written in your medical file, dictate whether you are a patient or not. Whether you are sick or not. Never mind your actual symptoms. Suddenly, you become “not enough.” Not enough of a patient. Not enough of a medical issue to be “solved.” Not enough to warrant time or attention.

And with that status of “not enough” sometimes comes, in my experience, a resigned sigh from a doctor and the type of frown that only means that you are no longer in need of their care. There are others who are “more sick than you” and who have more need for their precious time. And you don’t have the condition so, presumably, all is well?

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Author: Claire G.