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How My Dysautonomia Support Group Helps Me Feel Less Alone

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I was officially diagnosed this past year with POTS, postural orthostatic tachycardia syndrome. It is a form of dysautonomia. Dysautonomia is a malfunction of the autonomic nervous system. It affects the heart rate, blood pressure, temperature, digestion and other functions. I was diagnosed with POTS by taking a tilt table test where my heart rate increased more than 30 beats per minute. POTS patients experience excessive increase in heart rate upon standing. There are a wide variety of debilitating symptoms. I experience dizziness, fatigue, lightheadedness, nausea, sensitivity to noise and light, headaches and brain fog (cognitive impairment).

I felt so alone with my chronic illness. I’m grateful that I have a very supportive husband and a few people who truly understood what I was going through, including my twin sister who also has POTS, but the majority of people around me didn’t. I have gotten many of the usual comments a person with an invisible illness gets: “You don’t look sick,” “It’s all in your head,” “It’s anxiety or depression,” “You look better” or “If you take this or that you will be cured.” Or they even downplay my illness as to suggest it is not that bad. People also get upset when I have to cancel, or don’t believe me when I explain why. I try and educate people about dysautonomia and how it impacts me and my life. I know people have good intentions but they don’t fully understand.

I felt alone until I joined a support group with others who have dysautonomia. I am a part of Dysautonomia Support Network. The people in the group understand how dysautonomia symptoms are debilitating and affect your daily life. They understand you have to grieve the loss of your old life and accept the new one. They understand wanting to do more but not being able to due to your health. They understand the severity. They understand the frustrations you go through because they are living with it themselves. I felt I belonged. I was so glad to be understood and believed.

I don’t feel alone anymore, as people in the support group are there to encourage one another, relate and share common experiences. They also share ideas, resources and coping strategies. It makes you feel empowered and gives you a sense of community. It’s so positive and brings hope. You don’t have to explain to them what dysautonomia or POTS are. Being in the support group gives me so much strength and joy.

I am inspired by those in my support group, seeing them fight and give back to the community. Seeing them give of themselves even when they are having a rough day. It’s encouraging seeing the victories they have achieved despite having dysautonomia. I would encourage all who have a chronic illness to join a support group, whether it’s online, in person or both. Yes, I still have a chronic illness, but I don’t feel alone anymore.

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Originally published: November 4, 2016
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