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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