By Trudi Davidoff
Though an outlier, let me say that I am grateful to have been diagnosed in a little over two years since becoming noticeably symptomatic. I didn’t notice the loss of appetite or thirst creeping up on me or the constipation causing damage and created a fissure which is a small rip or tear in the anal canal. This was my introduction to things not being as they should be.
As I learned more about dysautonomia, I was surprised at the length of time and the number of doctors it takes to get a diagnosis. I’d seen only about a dozen specialists not counting those at the imaging centers who give and interpret so many of the tests. Despite being older, my diagnosis numbers of 27/12--twenty-seven months and twelve doctors is better than average and it inspires me to help others through advocacy and education. Last month, I gave the office that treated my fissure a copy of The Dysautonomia Project for their in-house medical library which they kindly and graciously accepted—they were among the many doctors who had not yet heard of POTS.
I had never heard of POTS; I had never heard of dysautonomia. But as I began reading and learning about it, I often saw the phrase ‘of child bearing age’ in vetted medical descriptions. But this wasn’t me. I’m going to be 60 soon and it’s been well over a decade since my last menstrual cycle. I went looking for answers but came away only with more questions.
How, when a syndrome is so new to the medical community, does a particular age group get segregated away from the others? POTS was named in 1993. In so short of time has enough data been gathered to support post-menopausal women being given an extra hurdle to a diagnosis? How many women have been symptomatic and accurately described their condition to their primaries, gynecologists, neurologists and cardiologists yet were told they had anxiety and were given a prescription for a low-dose anti-depressant and sent home with a pat on the shoulder? “There, there honey, you’ll feel better soon.” Sigh. Women are more than 2.5 times likely to be prescribed anti-depressants than men. 
It's time for a change. How do we begin to identify these women no longer of child-bearing age and get them to come forward so they can be accurately diagnosed? They may be stigmatized by being wrongly diagnosed with a mental illness in their younger years and do not wish to bring themselves continued condemnation, further frustration—and even the likelihood of feeling yet again, ostracized.
What medical practitioner will become the most important care provider for the post-menopausal dysautonomia patient? Would it be the cardiologist to help with blood pressure, the neurologist to help with the brain fog, or a nutritionist to help with the nutrition, hydration and eating habits that are so vital towards preventing syncope and pre-syncopal symptoms. Do we see a physical therapist to keep our bodies mobile and prevent deconditioning, or a primary care doctor specializing in geriatrics to assist our aging bodies and knowledgeably send us to the right dysautonomia-educated specialist for advanced help? Ultimately, all doctors should have increased training in dysautonomia related to their field and their education should be without the built-in hurdle of age-related bias.
As changes occur, I would like to see the phrase ‘of child-bearing age’ removed from the medical descriptions of dysautonomia. I feel there is much more research to be done and answers found before we instill a cultural sense that POTS and other OIs are mostly a problem of teens and young women. No person, male or female, needs their age used a barrier to a speedier diagnosis. It’s time for a change.
How do we combat this problem of medical age discrimination? We begin by identifying these women no longer of child-bearing age and encourage them to come forward where they can be accurately diagnosed. They may be stigmatized by being wrongly diagnosed with hysteria or depression in their younger years and do not wish to bring themselves further frustration and condemnation. They were already underserved, misdiagnosed and insulted by the medical community, who can blame them for wanting to avoid further ostracizing?
So how do we begin to help these patients? To learn more, we are making a small, eight question survey available. It is a beginning to finding gaps in diagnosing women and creating relevant age-related maintenance programs. Thank you for participating. The results will be published on the dinet.org website i.n September of 2017
Let the change begin.
Editor's note: This survey is sponsored by DINET and will take less than 2 minutes to take. Please consider helping Trudi and DINET understand more about dysautonomia. Thank you.
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