I was diagnosed with hypermobile type Ehlers Danlos Syndrome (hEDS) in 2021, after decades of symptoms while flying under the radar secondary to my general health and strength which made it easier to miss by medical providers. It has been a frustrating journey, made mostly invisible by our collective (and my internalized) ableism. To counter this invisibility and just general lack of awareness about EDS, I wrote this piece about my personal experience with hEDS. I hope you finish this piece more aware of EDS and more likely to challenge cultural and internalized ableism1.
hEds is
- Having people ask if you’re really sick and what symptoms you have, years later, as if to prove to them, self-chosen gate keepers, that you really have this thing that they know nothing about
- Gripping the edge of a desk while facilitating a zoom group so you don’t faint, live on camera
- Waves of dizziness, coming on unexpectedly, and also predictably with stress, fatigue, barometric/seasonal changes
- Guilt you may have passed this on to your kid/s and frustration that your older family members don’t look into this for themselves
- Watching your kids manifest symptoms and being helpless to prevent this trajectory
- Having fatigue and pain no one can see or that few take seriously because I look “ok”
- Something private I will never fully discuss in the open, to the public – parts are for me and my journey, alone
- Planning meals carefully to avoid an MCAS trigger
- Expensive supplements like quercetin, collagen, and histamine blocking enzymes
- Scars, from surgery and collagen challenges, scaring comes easy
- Pain from sitting for more than an hour (I hate sitting anyway)
- Pain from traveling in small cars or cramped (ie most) airline seating where I can’t easily straighten or move my legs or stand up
- Time expensive: researching my condition because medical providers can’t tell me much, recurrent physical therapy, multiple surgeries, additional food prep needs, more sleep needs, slower cognitive processing, boundaries for stress management, slower physical movement to avoid injury/counter my POTS/dysautonomia
- Pressure to know more and more so I can educate my providers to avoid some medical accident (ex. I cannot take the antibiotic Cipro or I will likely tear a tendon)
- Extra luggage when traveling to pack all my Eds necessary accoutrements (supplements and even an entire bag devoted to food and cooking supplies)
- Eating things I know will fuck with me when it’s easier, I didn’t get enough planning time, etc and dealing with the flare for a few days (plus the unknown around long-term consequences)
- Swelling (and risk of fainting while flying) from airline travel
- Stress-induced paresthesia, including one summer when my right pant leg by my calf always felt wet (it wasn’t wet, it was from stress and dysautonomia)
- Raynaud’s syndrome – the cold feels amazing to me but can be deeply painful to my fingers and toes
- Heat intolerance
- Blue feet
- Painful, swollen fingers from bruising at the joint lines while doing “simple” activities like washing dishes, vacuuming, or more challenging things like lifting weights
- Frustrating friends, partners, and family with my fatigue
- Frustrating friends, partners, and family when I’m not able to perform as expected, ex extra planning required if we eat out, my slower coordination/speed/motor learning for partnered, competitive sports
- Knowing I frustrate people and internalizing that frustration and ableism from family, friends, partners, self, and society and managing internalized oppressions (with self-care, creating community, exploring new friendships, and getting therapy)
- Knowing I need at least 2 more surgeries related to EDS and not having the energy or time to coordinate surgery plus life care at the moment
- Gratitude for having an umbrella to cover seemingly disparate health issues
- Gratitude for having words, understanding, and a medical diagnosis when friends and family just thought I was attention seeking or extra
- Not complaining so I don’t seem attention seeking or “extra”
- The surprise of finding another person with EDS in the wild
- The thrill of suggesting a friend or client get tested for EDS and the testing coming back positive; I have helped clear a new path for them
- Protecting my body with movement, particularly balance, coordination, and strength training
- Knowing my body does not fit templates – I will not heal or rehabilitate as expected
- Learning to say fuck expectations and embrace messy living and balancing that with others’ projections and expectations
- Finding kinship with others across the landscape of disability in the present
- Finding ancestry and lineage within the disability community
- Participating in disability justice and challenging access limitations, expectations, and norms1
- Pandemic life adjustments – I will be masking for much longer than the general public to avoid long term complications and symptom exacerbation
- Knowing I’m body-ful in a way many abled folks are not – I notice, learn from, understand, and value my body’s needs and nuances rather than ignoring them or taking them for granted
- Protecting my sleep because it is the most powerful medicine for my body, followed by movement at a close second
- Figuring this out on my own because most medical providers are trained in specific systems & cross-system diagnoses easily get missed or take years to diagnose
- Not rare. But the collective assumes it is rare based off of a failure of medical providers and researchers2
- Practicing self-advocacy as an upstream approach and care technique, both helping myself and making room for others to do the same
- Possibility, not deficiency. I can operate and advocate in new/er ways of being and having a body, and leverage that for joy even, like performing aerial/circus art. Possibility that I can contribute to disability justice by broadening our awareness around access. Possibility of knocking a few bricks out of the oppressive pillar of ableism. But/and this also requires work and tenacity in a system that doesn’t value difference, disability, grass roots art, and mutual aid.
Possibility that there is even more disability joy and community waiting for me and others. Thanks for reading, loves.
Notes/resources for the reader
- How can you use this information to challenge your own, and our society’s, ableism and access restrictions? Have you ever considered dietary needs as a disability or access issue before? How do you define disability? (many of us use the charity or economic models, but those are built off of white supremacy and capitalism and reduce the focus to how much a person can work – points that are 1) arbitrary and 2) important only for specific way of considering what it means to be human.) How can all of us bring greater access to our communities? And who is responsible for that access?, the person with the disability that is already experiencing higher monetary and time costs?, the event host?, the community?
- CNN recently featured an article on hEDS https://www.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl/index.html This article has a lot of information, including reference to numbers. To answer the author’s question in the title: There’s no cure or expensive medicine that will likely assist, plus it is thought (falsely) to be a rare condition. The Medical Industrial Complex (MIC) prioritizes funding and research to things that will make them money. hEDS, which requires relatively inexpensive lifestyle changes and supports, won’t make the MIC trillions. We, with long-term/chronic and/or invisible disabilities or conditions, have to support ourselves, often with a network of care and mutual aid. Welcome to the disability justice (DJ) movement, author. If you are new to DJ, follow activists such as Mia Mingus, Leah Lakshmi Piepzna-Samarasinha, Ejeris Dixon, Fat Rose, Andrew Gurza, Alice Wong, Syrus Marcus Ware, Bethany Stevens, among others, even our deceased beloveds, like Audre Lorde.
- I have discussed my experience with hEDS more on a podcast with Andrew Gurza, of Disability after Dark: https://podcasts.apple.com/ee/podcast/episode-315-talking-disability-death-cafes-and-eds-w/id1151890990?i=1000582049032 and https://ignitewell-being.com/podcast-follow-up-and-resources/
- Another blog piece written earlier in my journey https://ignitewell-being.com/you-dont-look-like-you-have-eds/
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Written by Dr. Allison Mitch (they/she, she/they), PT (DPT), CHEK practitioner, RYT500, certified sexuality counselor and educator; copyright protected, please cite accordingly.
Please note that this is post is not intended as personal, medical advice. If you need an exercise program or have specific medical concerns, contact a trusted health professional (and yes, I do take clients that have hEDS and other chronic conditions looking for an informed exercise program).
The image is from Pexels.
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