Considering how others perceive me and my invisible illness
Sometimes my EDS isn't as obvious to others as it is to me
Last week, an athletic trainer I was talking to asked why I had kinesiology tape on my leg. I told her I have plantar fasciitis and mentioned something about my Ehlers-Danlos syndrome (EDS). To my surprise, she said, “Wow, I didn’t know you had that. Actually, I don’t know that I’ve met anyone in person who has it!”
This was so strange for me to hear. We’ve worked together for nine years, and she didn’t know about my EDS! I don’t go around telling everyone about it, of course, but after so many years of working in the same place with the same people, they tend to find out.
EDS affects so many facets of my life. Chronic fatigue is my constant nemesis, and I always keep something caffeinated in my fridge for an afternoon pick-me-up. (V8 +Energy Peach Mango, made with black and green tea, is my favorite.) I can wind up covered with bruises and have no idea where they came from. Then there’s the never-ending pain and soreness, which can range from a dull ache to sharp, intense pain.
On the flip side, there are also many ways that EDS doesn’t affect my life. It doesn’t keep me from the teaching and counseling job I love, or from meeting new people and making friends. I can read books endlessly, play with my cats, and cuddle with my dogs (if they let me!) in my free time. While I have to be careful with my horses, I can still ride, and I love every moment I’m outside.
In my mind, EDS is a part of my daily life, but I also know that it’s often not visible to others in the same way that it is to me. There are times when I prefer this invisibility, as I can simply pretend that my EDS isn’t a “thing.” But then there are times when I wish people knew about it, such as when I get comments like, “You’ll understand when you’re my age,” or when I have to explain to a concerned healthcare worker that my outrageous bruise is from something completely innocuous, like walking into the corner of a table or smacking my elbow into a door jamb.
But overall, what I took away from the interaction with my colleague is that others don’t necessarily see us in the same way we see ourselves. It was interesting to be seen as “normal” for a moment, especially when talking about something that, for me, is EDS-related: my plantar fasciitis. The frequent invisibility of EDS can be a blessing and a curse.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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heather mcpherson
great article. how do you deal with being told you are making it up all your life?
Pat Bonnewitz
Hi. I’m 79 yrs old. Diagnosed in my late 60s. I was symptomatic since childhood, with my arms dropping out of sockets, painful, basically everywhere, GI issues. I’ve had 13 surgeries to stabilize joints, 2 knee replacements, 2 spinal fusions. I have a torturous aorta, and difficulty swallowing. Fatigue is my companion. Gluten free, dairy free diet. EDS is no joke.
Louise Mansfield
I’m so comforted to read about others with EDS who have had the same symptoms as me my whole life. As I age, the symptoms have gotten worse and I need to address them medically. I’m 73 and only now understand why I have been different. I’m glad I’m not just a “ complainer” or “overly sensitive “. My fatigue is not just” being out of shape” or “lazy”. And the bruising continues… sometimes spontaneously, without injury.
Thank you all, it is good to have company!!
Jennifer teel
Thank you Lois, we need to know there are more of us out there. Especially as we age.
Denise Powell
thanks - i needed this today
Julie McNeil
In my 60’s now, after a lifetime of pushing thru every possible hEDS issue without a single doc, including specialists knowing what they were looking at is traumatizing… Knowing what I’ve faced with the best insurance and access, I would never have had a child, passing this on, as my mother did, all unknowingly… The suffering in silence and gaslighting from docs, is criminal… We need specialist groups to form all over this country , and far more curious, open minded physicians who “get” it… PTSD created by same.
Anne
Yes, Julie, your post rings lots of bells. I was diagnosed in my early 60s and am now 70. I am sure my mother and grandmother had hEDS, as they had the same symptoms as I do, but got no help and one GP told my mother who had terrible ankle pain that there was nothing wrong with her. I agree that knowledge of this condition must increase. The EDS society now has conferences (some virtual and some in different places all over the world). If you google them you can access all sorts of helpful information. They are doing their best to raise our profile! I do not bother going to my GP. Even a consultant I saw two days ago for a pulmonary infection, knew little or nothing about the condition. The only real help I get in Scotland is from a private physio as I could not get this on the NHS. Let’s hope the next generation are better served. All the very best. Anne
Martha Muss
I’ve been told there are clinics for patients with EDS and HSD all over the country in specific regions. I’m waiting to be scheduled at one of the first to be opened in the Midwest—in ID. They take patients from several surrounding states. I was told I’d get an email within approximately a month (it’s been almost two months) to set up an appointment. I don’t have a lot of information yet, but you may want to call the EDS Society & get more info on this subject. It sounds promising!
Mia
Agreed, blessing and a curse
Matt
52 and my spine is buckled and twisted with classical eds and everything else
Lisa
****Can anyone point me to resources on how to actually obtain a diagnosis? *****
My HCP, physical therapist and two medical trainers are not familiar with HSD and I’m going in circles trying to educate them and persuade them to continue exploring treatments.
I also need help finding resources on what kind of strength training is helpful for for pelvic, lumbar Hypermobility resulting in chronic pain and arthritis along with stenosis. My trainer have me doing 45 lbs deadlifts but my SI joints are mildly degenerated and I’m afraid they’re asking me to do something that will be harmful to my body over time.
Hope this question here is ok - can’t quiet figure out how to start a thread on this topic