Coping With Your Diagnosis

Your suspicion of vEDS has been confirmed. Now what?

Back to Voices of vEDS

Relieved. Confused. Scared. No matter what your post-diagnosis state of mind, there are some things you can do that might help you in the journey ahead. Here are some things others have found helpful:

Join a vEDS support group

Whether online or in-person, it's helpful to talk with others who are affected by vEDS.

“There’s comfort in numbers. When you talk to somebody who understands what it was like to grow up with all these weird things happening, or somebody that has kids who can’t play sports, it’s comforting. Because then you’re not as isolated. You don’t feel as alone.”


Talk to a mental health professional

“Getting the diagnosis is weird, for sure. It can change your outlook on life. It probably would have been good to talk to a professional. I didn’t have any mental health support when I was diagnosed. I just kind of went through it on my own.”


Stay optimistic

“There’s hope now. When I was diagnosed 20 years ago, we didn’t know as much as we do now. We didn’t have as many doctors. There are multiple surgeons involved now. They know what team to put you on. They know what to monitor you for. They know so much more than what they used to.”


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