REAL FACES of HYPERMOBILITY:
Face #1: Megan
Meet Megan, a 21-year-old Fashion Design Student from Melbourne. She lives with Hypermobility Spectrum Disorder (HSD).
Megan has experienced symptoms of hypermobility her whole life and wasn’t aware that hypermobility was the cause of many of her symptoms. These included being extremely flexible but clumsy and having poor core strength.
Megan received a diagnosis of Hypermobility Spectrum Disorder when she was 20, which was only last year. Megan is waiting to see a geneticist to see if she may have Hypermobile Ehlers-Danlos Syndrome, which is closely related to the Hypermobility Spectrum Disorders. Megan’s mum also has many of the same symptoms, however, has never pursued a diagnosis.
Despite her own diagnosis, Megan is studying full time, which includes a 3 hour round trip into the city four days per week. “I love studying fashion design, but I have to carefully manage my study, energy and downtime in order not to burn out,” says Megan, while talking about managing her condition and courses.
When asked how she manages the workload, Megan replied, “focusing on planning and balancing my studies and energy is integral to staying afloat and balancing school, work and disability”.
On top of full-time study, Megan works part-time in the liquor department of a supermarket. Her tasks include unloading pallets, stocking shelves, and serving customers. She manages a 5-hour shift once a week then returns home exhausted.
Talking more about the symptoms of her condition, Megan elaborates on her most problematic symptom: poor posture. “It’s been a long process to gradually improve my posture, and even then there is still a lot that needs to be worked on.”
“It is frustrating that I need to work so hard at something that many other people do not even think about.” She goes on, “my shoulders have mostly been corrected, but in correcting those I’ve noticed I stand leaning forward with my spine curved and stomach poking out – so there’s another area that needs fixing.”
Another problem comes to her mind: her finger joints. Megan tells me “my hypermobile finger joints are proving to be a huge pain with my fashion design as they can hurt and not work properly when I need to do things like pinning and unpicking – also hand sewing is all but impossible for me.”
This condition is clearly frustrating.
Seeing a physiotherapist for help with the physical side of the condition, Megan has a GP who she has trusted to help her manage her condition. “My GP seems relatively on-board with everything – she is also seeing a friend of mine with a similar disorder. I usually only talk to my physio about HSD related concerns”.
Megan has worked out that an appointment with her physiotherapist every three weeks allows her to stay focused on her exercises, voice any concerns, and receive treatment for whatever aches & pains have been bothering her during those three weeks.
When asked if all health professional encounters have been as good as those with her GP and physiotherapist, Megan began talking about an appointment with a Rheumatologist that will always stick with her.
“He didn’t listen to me at all and was only familiar with the classical type Ehlers-Danlos Syndrome. So after he tested my skin stretch and it wasn’t as stretchy as what he was looking for, he completely discounted EDS altogether.”
She goes on, “He also wrote down the information I told him incorrectly (I broke my fifth metatarsal bone tripping down stairs and landing wrong when I was 16; his notes said that I broke my ankle playing football). He also didn’t tell me that he had diagnosed me with generalised HSD; just told me that I was ‘hypermobile’ which I felt was unsatisfactory.”
When asked how it worked out, Megan replied “Once I had a follow-up appointment with my GP he read from my notes the JHS (now known as HSD) diagnosis. I cancelled the follow-up appointment with the rheumatologist for a bone scan because of my disillusionment. I still believe that my symptoms and my self-description of pain levels were not taken seriously; and while the treatment for HSD and hEDS is largely the same, I plan to pursue further diagnosis for peace-of-mind.”
Unfortunately, situations like this are all too common in patients with hypermobility, which is why health professional education is one of Hypermobility Connect’s priorities.
When asked why she was happy to get involved in The Real Faces of Hypermobility campaign, Megan replied: “because I want the world to know we are not lying about it”. While she quotes becoming a more empathetic person as one of the benefits of her hypermobility condition, it’s definitely not a walk in the park. Megan chooses to focus on the positive “As someone who is both bisexual and disabled, this condition has helped me understand the intersection between marginalised communities. I want to fight for ways to make spaces inclusive and empowering to everyone.”