REAL FACES of HYPERMOBILITY:
Face #5: Sarah
Meet Sarah, mother of one & a self-employed music teacher who lives with Hypermobility Spectrum Disorder.
Sarah recalls her earliest memories of difficulties relating to hypermobility were in Grade One when she had trouble walking up the steps into the classroom. However, like many with hypermobility conditions, Sarah wasn’t officially diagnosed with Hypermobility Spectrum Disorder until the age of 37. By that age, Sarah had already given birth to her now 19-year-old son, was forced to give up on her dreams of a career in music or on the stage, and had endured unexplainable symptoms with little medical input.
When asked about her diagnostic journey, Sarah tells an all too familiar story of seeing an unhelpful Rheumatologist, “After months of reading I really related to the symptoms of EDS. He literally just rolled his eyes at me and said that EDS is extremely rare so there was no possible was I had it.”. This was prior to hearing about the Hypermobility Spectrum Disorders diagnostic category.
Then how did Sarah come upon a diagnosis? “I went to a support group online, found out about a doctor close to me who could diagnose it, I went to my GP and got a referral.” She adds, “There was another doctor who said to me, she wanted to help me but she wouldn’t because she didn’t think I will listen to them, because “I’m highly intelligent”. They were her exact words.”
Needless to say, Sarah doesn’t see the point in seeing doctors to help her manage her condition. She doesn’t have a team of health professionals because she isn’t really sure how they could help her. She has seen a physiotherapist and does her exercises routinely at home, but otherwise, Sarah largely self-manages her condition. Sarah’s experience is summed up by her statement, “My big beef is with the ones that do know what they’re talking about, but don’t tell you anything, so you’re still left on your own.”
Sarah went on to say that she’s found it difficult to find a doctor who can do anything to treat her symptoms, they largely just sit there and nod their heads as though they’ve heard it before, are expecting it, but have nothing to say about it.
For Sarah, her most problematic symptom is blood flood. She now has a tilt-in-space wheelchair, which allows her to lie backwards to help with this. Because hypermobility impacts internal structures, as well as the joints, Sarah’s blood vessels have a hard time efficiently pumping the blood around her body.
“My blood vessels don’t constrict well enough to push the blood back up to my head. I also have trouble getting blood back down to my feet, which I’ve never heard anyone talk about.” When asked how this impacts her life, Sarah replied, “That would have to be the thing that stops me from living.”
And Sarah isn’t the only one in her family who has been impacted by hypermobility. Sarah talks about the way having no diagnosis affected her mother. “I remember growing up with her saying if she just had a name for her suffering, she looks fine on the outside, she wouldn’t have been persecuted, mocked and abused by her family, by people in the community, businesses. Everywhere she turned she was abused because she looked fine and didn’t have a name for why she wasn’t.” And this is one of the reasons Sarah is so passionate about raising awareness about hypermobility conditions.
When I asked her what message she had for the world about hypermobility, Sarah said “It’s not just a matter of bendy elbows, knees etc. I think even people who don’t have a condition like EDS or HSD if they go and use their bendiness in a profession, it will catch up with them. Our bodies are miracles, but they’re not magic. Don’t just assume it’s really cool. There could be a hell of a lot more going on because it’s inside the body as well.”
In addition, she says, we need to make some noise about hypermobility “because doctors are still not being educated. And the medical profession at least needs to be educated.” And it’s very true. A lot of doctors are taught in med school about Classical EDS – the type with the stretchy skin that you see on those “The World’s Weirdest Bodies” type shows, and Marfan Syndrome – the really tall people with heart problems. They’re not taught about the other 12 types of EDS, or HSD or Loeys-Dietz Syndrome.
They should be.
Sarah’s parting remarks, I think aimed at the health & medical profession, though applying equally as well to friends and family,
“If someone shares their experience with you, you don’t have to understand it, but you do have to believe them. Even if they’ve been suffering for years, and the manner in which they speak seems to be stressed out or seems to be exaggerated, you have to understand that that is a result of them never being heard or never being believed, not of them being a hypochondriac.”