Getting Back Hope
Two years ago, after 10 years of undiagnosed symptoms that were stealing my energy, strength, and resilience, a doctor finally gave me an answer and an assignment. “I think you have POTS,” he told me. He wanted to treat me but he could not, it wasn’t anything close to his specialty. He tasked me with finding the best specialist I could and we each set out to do our own research.
This began my our POTS research journeys. And two years ago, there was only one organization that offered information, support links, and resources to find educated physicians for not only patients and caregivers but also to fellow doctors. That organization was Dysautonomia International.
Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, which is a dysfunction of the autonomic nervous system (the ANS). The ANS controls many automatic functions of your body, functions such as your digestion, temperature control, heart rate, and blood pressure. When those systems are compromised, your body goes haywire. This ranges from anything from overwhelming fatigue to tachycardia to fainting to digestive dysfunctions to chronic pain… the list goes on. Some of us are bed bound, some of us can run marathons, but we all have one thing in common: our lives are never ending cycles of uncertainty. We take everything one day, one hour, one minute at a time.
Dysautonomia International was formed in the vacuum of patient advocacy and support groups. They pool their resources of brain power and volunteer support together to host patient conferences, physician education programs, research studies, and fundraisers. Every hour of volunteer work I've given to this organization, every vial of blood I've given to a research study they helped fund, has yielded answers. Every bit of awareness I've raised has been amplified louder because of them. Their presence has given me peace of mind at night because I know I am no longer alone, I know that I am seen, I know I am no longer feeling miserable with no name, with no banner, with no support. They are there for me.
Dysautonomia International has become my family. Everything I give to them, I get back tenfold. This organization has connected me with a brilliant POTS specialist who has gotten to know me as a person and as a patient, an internship that allowed me to learn and grow as an individual while letting me take the time to take care of my needs, and has introduced me to individuals that care and comfort me as well as make me laugh harder than I thought possible.
As for my original diagnosing doctor, he has learned more than he ever thought possible from this organization. He has gotten involved with research and is now making this one of his specialties, something that would not have been possible without the work of Dysautonomia International.
This organization is my safe space. It is the voice of thousands who give them their time and get back their strength. They have given us information and resources but most importantly, they've given us back hope that we will be healthy and reclaim our lives again.
Review from #MyGivingStory