“You Don’t Look Like You Have EDS”

Fitness Friday:  “You don’t look like you have EDS*”…… this from a surgeon to me, he continued, “You look strong”.


Before we continue, his statement has some challenging perceptions within it:  1) biases in terms of what diagnoses “look like” and that patients/clients with a diagnosis will all present similarly1, 2) the ill-prepared nature of many medical providers when working with people with “rare” diagnoses2, 3) that strength and EDS are mutually exclusive3 (you can’t have both)……perhaps a pinch of ableism here too for thoroughness.


In addition to those problematic perceptions, his words caused me to reflect more broadly on my journey with exercise,  how I likely mitigated the symptoms of my diagnosis through my physical activity practices, and how exercise can be used to help others.


I have been a regular exerciser since middle school.  While never really fond of sports4, I identify as athletic, and as such, I learned and trusted my body’s capabilities and wisdom (though I didn’t always listen).  Whereas many people stick with what they are good at and stay there, I trained my weaknesses (for this consideration, strength).  I always knew I was hypermobile (EDS confirms why) and developing the surrounding muscles kept my joints from hyperextension, subluxation, or even dislocating (up to a point, muscles will eventually fail).  Muscle strength, when balanced, is joint protecting.


This is why I look the way I do – I can tolerate a good bit of activity because I’ve trained, over decades, diversifying and grading my exercise to continue to challenge myself, and I have a body type that hypertrophies fairly easily.  But, my strength, while protecting my joints and likely preventing more typical injuries associated with EDS, likely contributed to missing this diagnosis for years (case in point, the surgeon’s presumption).


Besides protection from complications of EDS, exercise helped me recover from a budding eating disorder.  Exercise, particularly yoga, helped me recover from depression5.  Exercise is my preferred stress management technique, as if in moving, I can shed many of my anxieties as my body forces me to be in the here and now.  Exercise is also prayer to me – moving my body with gratitude and in joy centers what is meaningful for me (if not for gratitude and joy, what is the purpose of life?).  Exercise is a gateway to creativity for me – keeping my body occupied, and despite my efforts to keep my mental presence with my body, my mind often crafts essay pieces, workshop ideas, paintings I could try (but likely never will), and snippets of poems.


Exercise was and is so pivotal to who I am as a person that I decided to explore it professionally – as a physical therapist, personal trainer, and yoga instructor I own a small business focused on fitness6 and wellness.   And exercise professionals, such as myself, know how critical movement is.  Exercise can prevent disease including cancer7, reduce the risk and sequela disability8, reduce mortality across BMI and ethnic groups9, improve quality of life of older adults10, improve your sexual wellness11, etc etc etc.  The benefits of movement are seemingly limitless, which inspire me professionally.  Exercise is both magic and medicine and extra bonus – it can be easily individualized to maximize the goals and well-being of the patient/client.


If you exercise, why? What health benefits from movement are particularly salient and motivating to you?


I exercise for all of these above reasons and more.  My exercise habits saved my life, while adding meaning and purpose.  In many ways, I am grateful that my strength from regular exercise were and are protection from injury secondary to EDS, though the diagnosis still presents me with troublesome impairments (like dysautonomia, fatigue, and coordination challenges).  I am, in some ways, also grateful for the diagnosis – it explains disparate health issues that have been bothering me since childhood and having an umbrella diagnosis to explain these issues brings clarity to my lived experience.


If you are an exerciser or an athlete, how has movement helped you?  If you have a disease or disability, how has movement supported your health, joy, or well-being? Or did movement do so well in supporting you that medical providers missed an issue or diagnosis?


One big caveat is you get what you pay for – make sure the exercise professionals you utilize are well-trained12.  Also, go slowly to build strength and endurance, while preventing injury from over training.  Listen to and trust your body – it knows what you need better than a barking personal trainer.


~Wishing you all joy in movement.  Thanks for reading~





Notes and References:

*For info on EDS: https://www.ehlers-danlos.com/what-is-eds/

  1. The same diagnosis can present differently in different people (variables of genetics and environment and support systems and health behaviors all play into this).
  2. Medical providers are people too – they are prone to error, they have biases, and are becoming more specialized. As we burrow into our own niches, it can be hard to keep the big picture, less familiar diagnoses in mind. There’s a common saying in medicine – “when you hear hoof beats, think horses” (ie not zebras), meaning that the simplest or more common explanation is likely the more accurate than the more rare or unusual explanation.  People with EDS refer to themselves as zebras….for this reason.  They aren’t the horse, but the zebra making noise.
  3. The same diagnosis looks different in different people. Some will have greater impairments or activity limitations than others. Assumptions and stereotypes are made about my ability based on my diagnosis.  Because EDS can be disabling to some, this could be considered a form of ableism – instead of witnessing the presentation of the person in front of him, the doctor made assumptions about what someone with EDS “should” look like and “should” be able to do.
  4. Ugh, rules – not a fan. Double ugh, when those rules don’t fit your body. Example, when I participated in obstacle course races – I could not and would not do chest to the floor burpees or push ups, which could have disqualified me from competition.  My ulnar nerves sublux with chest to floor push ups.
  5. Note that everyone is individual in their needs and what will help them. Please see a trusted medical provider to help you. However, I also challenge the reader to not individualize mental health issues – I believe depression is biopsychosocial and impacted heavily by social/relational/cultural influences (ie misogyny, racism, patriarchy – all systems of harm; it’s a miracle there are people NOT depressed living in our current climate of harm).
  6. Fitness can and should mean a variety of things, depending on context and a person’s self-concept. But when we consider what fitness means culturally, it usually pulls to mind a certain image – thin, able bodied, white even. This idea of what a fit person looks like needs to be culturally challenged and rejected.  I do that in my other writings, as do many other creative and aware people in the fitness industry.  Also, not all those that look “fit” as is typically judged by our culture and even our medical providers are disease and disability-free.  A person can look fit and healthy (whatever that means), but have an eating disorder or over exercise.  As in my case – here the façade of strength made my EDS unnoticed by providers for years.
  7. https://www.cancer.org/latest-news/how-exercise-can-lower-cancer-risk.html#:~:text=Physical%20activity%20can%20help%20regulate%20some%20hormones%20that,helps%20regulate%20hormones%20and%20helps%20the%20immune%20system.
  8. https://www.nap.edu/read/1579/chapter/9 and https://pubmed.ncbi.nlm.nih.gov/29921654/ and https://pubmed.ncbi.nlm.nih.gov/30743265/
  9. https://pubmed.ncbi.nlm.nih.gov/22399701/
  10. https://pubmed.ncbi.nlm.nih.gov/30573142/
  11. https://www.webmd.com/men/features/exercise-better-sexual-health#:~:text=%20Exercise%20for%20Better%20Sexual%20Health%20%201,down%20the%20road%2C%20take%20note%3A%20A…%20More%20
  12. https://ignitewell-being.com/why-you-should-work-out-with-a-physical-therapist/
  13. Picture below – I was playing around making a salves video for my Patreon patrons and caught sight of my arms.  I love my arms – I have a hard time saying that since I know the way they look fits a certain narrative and sounds egotistical (and I wish for neither of those things – limiting appearance standards and egotism).  This appearance of strength is what the surgeon was referring to.  If you are a medical provider, please challenge your biases regarding certain diagnoses appearing a certain way.



Written by Dr. Allison Mitch, wellness practitioner working to awaken and re-center joy and pleasure through Ignite Well-being. PT (DPT), CHEK practitioner, RYT500, 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.

The image is from Pexels.  The picture is mine.

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