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Do Support Groups Really Help People With Chronic Illness?

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I’m sure that in future years to come I am going to get asked this question quite frequently when mentioning that I live with Ehlers-Danlos syndrome and a range of other chronic illnesses: Do support groups help you with your chronic illness?

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Well, I can’t speak for everyone, but after my dad and I attended our first meeting together, within two seconds of walking out the door, he said, and I quote, “I will never forget today.” My father does not have Ehlers-Danlos syndrome, or any other chronic illness, but it felt in that moment that we, as a whole group of six women fighting similar battles, we had been heard. But as an outsider looking in, my dad was kind enough to take the time and listen to the facts. And after that day, my invisible illness wasn’t so invisible anymore, to someone who had always envisioned me as healthy.

I can’t physically take family members or friends, doctors who never believed that my pain existed, etc, and make them feel what I feel. But when you get even a small amount of people sitting around in a circle, spread out on the floor or in chairs, we can speak volumes to outsiders coming in to learn information, and give them a name and a face to the cause. The great thing about meeting people with my chronic condition is that I get to put names and faces to a disease only a few in the medical field want to see. I get to share experiences and found out information from others. I am able to share future doctor’s appointments and concerns, as well as cheer along others on the path that we are all traveling down, the path where we feel alone, where the outside world doesn’t know us, or just can’t see us.

I do not claim that support groups will make you feel better or change your physical condition, but what I will say is that I want to invite each and every person reading this to put my name, and my face, with this disease.

I am one voice, but I am not alone. My name is Daisy B, and I have Ehlers-Danlos syndrome. And I bet if you could listen to all of our singular chronic infused voices combined, you’d see a disease some like to call invisible unearth itself as our normal.

Originally published: September 28, 2016
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