“It feels like a roller coaster you can never get off of – being judged by the world for looking normal when inside you are anything but.”
This is what Susan says about her life and how she feels living with Dysautonomia.
Intro To Dysautonomia
Being a rare medical disease, Dysautonomia is difficult to discuss with family, friends and significant others. It presents with a gamut of symptoms that can be mild and manageable. But, it can also be severe and completely devastating, leaving some dysautonomia individuals disabled and bedridden.
As if Dysautonomia itself is not enough, people who are diagnosed with the disease may have co-existing diseases that are as debilitating. These are Guillain Barre Syndrome (GBS), Systemic Lupus Erythematosus (SLE), Diabetes, small fiber neuropathy, and autoimmune encephalopathy, among others.
An Autoimmune Disorder involves an unacceptable immune response towards something within the body itself. — Linda Walter LCSW
The Story of Lee
Lee Wiltshire is one of the few people living in South Africa who suffers from dysautonomia. Hers is a difficult experience as she has what is called POTS, or postural orthostatic tachycardia syndrome, a type of dysautonomia where one is unable to stand for more than two minutes without feeling lightheaded or worst, passing out. She also suffers from memory loss, constant urination and anxiety.
Ultimately, Lee has difficulty managing her tachycardia, which is an increase in heart rate of up to 120 beats per minute (in the case of dysautonomia) when she stands for longer than a few minutes.
“Sometimes I have no warning and just drop. Other times, I have a chance to lie down on the floor to get my heart rate back to normal. If I need to go somewhere where I know I’d have to stand for a while, I have to use a wheelchair.”
There are about three million Americans who, like Lee, suffer from POTS, and definitely millions more worldwide.
Many people do a lot of their own research of their symptoms, causes and hope to find ways to manage their health issues through diet, medication, supplements, exercise and lifestyle changes. — Danielle Swimm LCPC
Ways to Cope
There is no known cure for dysautonomia, specifically POTS. But as more and more people have come out and have spoken about their stories and how they live with this debilitating disease, here is a list of simple ways they have shared about how to cope with dysautonomia.
- Learn more about your disease. ‘Knowledge is power’ is a cliché but it goes a long way. Reading and researching leads to a better understanding of your condition and consequently knowing how to control your symptoms. It is best to be updated with recent trials or studies that have been performed about dysautonomia. Perhaps, you can discuss what you learned with your doctor and fill him in on what’s new.
- Practice meditation and other calming exercises. Most individuals with dysautonomia also suffer from anxiety and depression, further aggravating their condition. It is recommended that you engage in routines that promote relaxation and peace of mind. Meditation is one of the best ways to achieve that. Yoga is also equally rejuvenating. These practices are greatly beneficial in maintaining a healthy physical and mental well-being.
Sufferers can be seen as weak. However, the persistent and pervasive distress experienced by people with these diagnoses is distinct from typical or expected ups and downs. — Deborah Barrett Ph.D., LCSW
- Seeking help through therapy and support groups. Sometimes, sharing your story with people who are also in the same situation as yours can be therapeutic. Support groups online are a way of getting to know people all over the world who may be on the verge of giving up. You can also help them by providing them with the hope that life doesn’t end with having dysautonomia.