REAL FACES of HYPERMOBILITY:
Face #3: Liz
Meet Liz, one of newest resident bloggers here at Hypermobility Connect. Liz is a mother of two who lives with Hypermobile Ehlers-Danlos Syndrome.
Liz started having symptoms well before receiving a diagnosis at age 43. She went on a two and half year journey in 2015 in search of a correct diagnosis after many misdiagnoses. She recalls seeing a podiatrist for her feet back when she about 12 years of age and dental work commencing at age 13 for overcrowding and fitting of orthodontic braces.
Along the way, Liz has also been diagnosed with dysautonomia and orthostatic hypotension, common comorbidities in Hypermobile Ehlers-Danlos Syndrome.
When asked about employment, Liz replied
“I used to work from home as a massage and holistic therapist, but I find that I don’t have the strength in my hands anymore to be able to carry on with this. Also, the crippling fatigue that I experience at random, typically during the afternoon, means I couldn’t commit to a full-time job”.
When I asked Liz about her most problematic symptoms, she said, “that’s a difficult one to answer, as this condition is so multi-faceted. The aches and pains are annoying, but I find the brain fog hard to deal with. It makes me exhausted mentally every day”.
Like many people living with Hypermobility, Liz has a team of health professionals who work with her to maintain her health. The mainstays of her team are her physiotherapists, with two on her team. When asked why she sees two physiotherapists, Liz replied, “They’re both in the same practice. I see one for ‘rehab’ physio, meaning that he gives me exercises to strengthen my weakest parts and gives me advice on any pains I have and how we can better the muscles to help support me. The other is a hands-on physio, who gives me myofascial release treatment when my muscles get too tight, which they frequently do.”
When we talked about other health professionals, Liz also reported that she sometimes sees a chiropractor, a cardiologist and works with a clinical psychologist for pain management purposes. None of these are uncommon members of a healthcare team for someone with hypermobility.
Talking about the clinical psychologist on her team, Liz also reveals “I also talk to her about the trials and tribulations of dealing with this long-term condition on a day to day basis. She gives me the tools I need to manage it and to get the best out of myself.” Like many, Liz reports that her psychologist is her “go-to” person on her team.
Unlike those on her team, not all the health professionals Liz has encountered have been helpful. Like too many people living with hypermobility, she has experienced misdiagnosis at the hands of medical professionals as well as unnecessary invasive treatments. In addition to physical misdiagnosis, Liz recalls “I was misdiagnosed with Generalised Anxiety Disorder when I sought help for feeling “tired but wired” when my youngest was only two. Looking back, I can see that I was really struggling with my Dysautonomia symptoms at the time.”
Hypermobile Ehlers-Danlos Syndrome has surely cost Liz a lot of things. I asked her “have you gained anything or is there anything positive about living with your condition?” to which Liz answered,
“There certainly aren’t any physical benefits to having this condition. The only positive thing that has come out of my diagnosis is that I have learnt how to be kind to myself, to give myself a break, to pace myself rather than trying to be such a perfectionist and finally, to see what is really important in my life. I now feel much stronger mentally even though my body is letting me down.”