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The Silver Lining: Finding Friendship in Support Groups

Jolijn, age 42, The Netherlands

After an Epstein-Barr virus infection (a.k.a. mono) in my teens I was left exhausted, always. When I was diagnosed with POTS in 2006, I had already seen multiple doctors from multiple specialities. Back then I could not find a lot about POTS on the internet, and the hospital did not have a brochure. I could not even pronounce Postural Orthostatic Tachycaria Syndrome. The only written information I really had was a scientific paper that the doctor printed for me, which I could not really understand because it was written for physicians.

The most visible symptom for me is fainting. But there are numerous others symptoms, like extreme exhaustion, sweating, experiencing difficulties with both hot and cold weather as well as temperature changes, food intolerance, difficulties with concentration, "mental clouding/brain fog" and many, many others. How can all of these come from one disease? Because POTS affects the autonomic nervous system, the part of your nervous system that controls other body functions.

Since this is such an invisible condition, it was way to easy to push myself to do things that were really to heavy for my body. But the physical setbacks come after the activity, so fueled by adrenaline I could do something, but the negative physical consequences follow later. For instance, I could do my job, but then had to sleep all weekend because I was (and still am) fundamentally so exhausted. Both my pregnancies where big setbacks for my body, I never really recovered from the 9 month long, 24/7 vomiting and other hormonal symptoms.

My illness continues to progress. I seem to catch every flu, cold, or other infections from other people, so I get these infections often and recovery takes a lot longer for me than for others. I had pneumonia twice in the same year! I later had a surgery that left me with severe fibromyalgia (chronic pain). About two years ago, I learned that I also have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is actually a common combination of conditions,  amongst some other diseases. Everything fell into place for me.

Looking back now I cannot believe how much had I pushed myself over my bodies limits over the past 20 years. Partly because it took so long to be properly diagnosed, partly because my own sense of responsibility for, and taking pleasure in my work, being a mommy, wife, daughter, sister, aunt, and friend...

Besides all the love and practical care I receive from the people I love, being in a patient support group is very helpful for me. I got to learn to know some amazing people. Strong and kind people, that have become friends. We listen to each other's stories, give practical advise from our own experiences. It is so helpful to talk to someone that goes through the same as you do, and it can lead to beautiful friendships.

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