I was diagnosed with hEDS by a geneticist at Mayo Clinic. My skin isn't saggy, but it is velvety and doughy, and some parts are incredibly stretchy - to the point that Mayo performed a blood test to ensure I didn't have the classical type. As hEDS is a congenital issue, not everything is within my control... but not everything is out of it either.
I've had to accept that some symptoms are simply a fact of life for me and not caused or significantly increased by the mind-body connection. While performing my nerve biopsies, for instance, the neurologist said upfront that he had a difficult time making the circular incisions due to my skin's unique texture. He commented on my heavy bleeding, as did a gastroenterologist who took a sample from my stomach. As another example, I went through years of tattoo removal because nobody - including myself - understood my skin when I had a larger bold piece done in college, causing the highly acclaimed and experienced artist to overwork my skin. The piece still contained bloody scabs after a full month and took about three times as long as it should have to heal. It was blown out and looked terrible after the healing process, which was unheard of for that esteemed artist. Just like the neurologist, the artist intensely struggled with my skin. I recently had a fine line tattoo (no more bold designs for me!) placed over the now removed tattoo, and what would normally take most artists <40 minutes to complete took >3 hours. I’ve had four artists comment on my bleeding, too. The morale of this story is that I can't change the texture of my skin - which I've had since before I was even born - with mind-body healing and there will always be special handling and healing considerations for me. I've also had to accept that the mind-body connection will not put an end to potential subluxations when I'm eating or dancing with my friends, pens and pencils sinking into my skin while writing will never be comfortable, the unprepossessing piezogenic papules on my heels are a permanent result of my connective tissue, etc.
At the same time, I fully recognize that other symptoms, such as dysautonomia that was leading to different issues including extreme nerve pain, are very manageable and only become troublesome or disabling when I'm dealing with intense emotions. Writing essays with pens and pencils was not pleasant in school, but I'm able to hold my cell phone without immediately shrieking from serious nerve pain... unless I'm going through something emotionally. Mayo confirmed that my blood vessels have structural abnormalities due to my collagen formation, but my Raynaud's is barely noticeable when it's over 15 °F outside... until those emotions are in overdrive. When I'm in a bad way, my hands will turn purple from a 50 °F day. I have menstrual problems that both EDS and stress have been shown to affect. Some people with hEDS go from having debilitating POTS to standing just fine after taking the mind-body approach. I genuinely believe the dysautonomia that is often seen in EDS can make us more prone to developing emotionally-driven symptoms given fight-or-flight mode, but this can be managed beautifully! And regardless of EDS, stress can cause your immune system to become less effective, leading to increased infections, further healing delays, etc. This is all where mind-body work dramatically changes everything for me.
So while not every EDS symptom is caused by the mind-body connection, emotions can certainly lead to and/or amplify other symptoms. I may not always know which is which, and this is why addressing my overall outlook and anxiety has helped me tremendously. There needs to be a moment where you accept that life will never be perfect and may involve some symptoms. Sometimes the treatment of our symptoms falls outside of mind-body work, or at the very least isn't 100% reliant on mind-body work. We are not alone: anybody who lives long enough will eventually develop some sort of a chronic condition or major bodily change. Longevity experts debate whether aging itself should be considered a disease. I may have EDS, but I am still here and able to live a fantastic life filled with things I love and enjoy. I'm not disabled. Anxious thinking can make me feel otherwise, which goes back to the management of my anxiety (an ongoing process) being critical and a top priority. Mayo told me to stay off negative EDS forums and watch my attitude toward the things I cannot change - and I truly believe this was some of the best advice I've ever received. As a result, the uncertainty regarding whether a symptom is mind-body driven has become easier to deal with over time. Outcome independence is exceptionally freeing. I understand my body better and am empowered to work with my medical team to make executive decisions about treatments. To confirm, I only work with providers that recognize the mind-body connection - this also helps alleviate my uncertainty.
Bottom line: addressing fear and emotions, combined with accepting that we may experience symptoms, is a game changer. I can't always automatically confirm to which degree every symptom is influenced by the mind-body connection, but that's why getting back to living my life was dire. It's thrilling to see some symptoms decrease or even completely go away, and I can't give my up life over the symptoms that stayed. Be mindful of outcome dependence and catastrophic thinking. Nobody wants to have a chronic condition, but fear is what ultimately makes life feel too painful to go on.
As a final note, this reminds me of when I became deathly afraid of elevators after some incidents, a huge issue for someone living in Chicago (not the suburbs, but the actual city where elevators are simply unavoidable). My cognitive behavioral therapist recommended exposure therapy after COVID forced me to work remotely and several weeks of avoiding elevators made me have nightmares about going back in them. It’s as if my brain said, “I never loved this. I really started to despise this, and now that I’ve had a break from it, I never want to do it again.” As a Chicagoan, I could only forgo elevators for so long. I explained to my cognitive behavioral therapist that the elevators at my office actually did break down quite frequently. What was the point of trying to prove otherwise? He reminded me that I may indeed get stuck in an elevator one day, but the point of exposure therapy was to prove that I could STILL handle it. That is how I view EDS, and that is true outcome independence.
