Friends with the same condition
Doctors, in my experience, tend not to approve of patients becoming friends: “They’ll make each other sicker”; “they’ll become obsessed with their illness”; “it’s unhealthy”.
Personally, I disagree. Having friends with Ehlers-Danlos Syndrome has changed my life for the better.
Sometimes ‘healthy’ friends don’t understand why you often ‘can’t go’ or cancel on plans yet still want to be invited, or why you can’t keep up when they’re walking. They don’t understand why you’re always missing school, or they’ll be grossed out by dislocations; sometimes they won’t believe that your pain is “really that bad”; they don’t often understand about mobility aids as “you were walking fine last week”.
When your friend also has EDS, you have a better understanding of each other. You get that sometimes they can’t go out, or that the pain is “that bad”; that doctors just don’t get it, and physiotherapy hurts pretty badly. They’ll understand yelling at your joints in frustration when they just won’t stay in place; sporting so many braces and splints that you look like you were in a car accident. When it comes to the weird and the wonderful of EDS, they get it.
The support from EDS friends is so encouraging, and the competitive drive to be healthier and more mobile than each other is great motivation for keeping up physiotherapy. Sometimes doctors think it becomes a “who can be the sickest” contest; it’s the opposite really, but still very supportive. Doctors seem to believe that having a ‘disabled’ friend will make you more disabled and therefore having healthy friends is healthier. This is – well – it’s just not true! A healthy friend can be more disabling and isolating because they just don’t get it.
A healthy friend’s belief that yoga or a fad diet that their friend’s second cousin’s uncle’s aunt’s great grandchild’s niece does, got better from doing, and will cure you, can be frustrating for both people involved. Frustrating for the friend because they think you aren’t trying hard enough to get better and frustrating for you because they just don’t get it. That amount of frustration doesn’t tend to be the foundation for a supportive and lasting friendship.
Understanding, common interests, and support – these are the things to build a friendship on. It’s NOT a doctor’s place to disapprove of a friendship that has all these things, just because of a similar illness.
Whilst I’m not one to like my illness, I am grateful for the wonderful friends I’ve made because of it. Understanding, kind people, with depth, personality, and common interests, independent of our common illnesses. I am glad to have other friends with EDS.
Note from Michelle: It’s good to have friends who understand; it’s fine to have friends who also have EDS. However, it has to stay healthy. If the friendship becomes simply a place to air negative thoughts, and complain about how bad things are, then it’s not going to be a healthy thing for long. We don’t need to be surrounded by negative people – we need REAL people. Real people can usually see and express positives as well as negatives. Pity-parties aren’t a great place to hang out, as I’m sure you’ve worked out. Don’t get sucked into one by your friends.
My name is Jessica, I’m 18 and from Sydney. I have hypermobile EDS amongst other things and enjoy dying my hair different colours of the rainbow, photography, graphic design, writing and reading, even if I have to do these things a little differently to those without hypermobility.