Recently, an old friend from Boston was diagnosed with Ehlers-Danlos Syndrome, after years of chronic pain. She asked for words of wisdom. This was my response.
I was diagnosed with EDS three years ago. I’d sprained my ankle running, and it never healed properly. I didn’t know anyone else with EDS. The only thing I knew about it was from reading The Contortionist’s Handbook, which points out that it’s actually quite rare for contortionists to have EDS.
Genetists tend to send you home with an overwhelming amount of information and lifestyle recommendations. If you search the Internet, it’ll just get worse!
It’s normal to feel overwhelmed. Geneticists are scientists, not doctors; they’re not known for their bedside manner. Get some support, talk to a friend, and try to pace yourself. You don’t have to change your life overnight.
Don’t Make Comparisons
Everyone with EDS is different. Diet and exercise have a huge impact on symptom severity, but “just do Pilates!” or “become vegan!” isn’t usually helpful advice. If you’re already a vegetarian or vegan, or athletic, you’re well on your way to managing your symptoms, but stressing out your body by making major lifestyle changes will be counterproductive.
Beware Support Groups
There are tons of Facebook groups that offer local and global support. They can also be infested with drama, flame wars, and Oppression Olympics style comparisons.
It can be really helpful to make friends with EDS, but be mindful of how much time you spend on Facebook, and if your support group is just making you depressed, mute or leave it.
Get a Wallet Card
Print out this wallet card, from the EDS Foundation’s website and carry it in your wallet at all times. If you’re ever critically injured, it’ll give the emergency room staff information on what to do and not do. This is especially crucial for Vascular EDS.
Buy a Book on EDS
Isobel Knight’s A Guide To Living with Ehlers-Danlos Syndrome and Kevin Muldowney’s Living Life to the Fullest With Ehlers-Danlos Syndrome are not only great things to read to understand your diagnosis, they are physical objects you can bring to doctor’s visits to explain your situation and symptoms.
Get Used to Educating Your Doctors
If you live in a big city, you might have doctors with multiple EDS patients, who will be experienced and understanding. If you live in a small town, you’re probably going to be the first case your doctors have seen since med school. Get used to explaining EDS and having to be your own advocate. If you can, ask your local EDS group for recommendations.