Speakers on this topic seemed hesitant and careful about how they presented. The vast majority of us patients have been told that we were crazy, that it was "just anxiety" or all in our heads. So we can be a bit defensive when hearing, after finally proving that it's physiological, to be told that some of it actually might be psychological.
But the reality is so intertwined -- EDS and its comorbidities can, on a chemical level, cause anxiety and depression, even things like bipolar and eating disorders. Inversely, stress hormones (and untreated anxiety, depression, or other mental illnesses) make EDS pain, POTS/MCAS flares, and other comorbid symptoms so much worse. The increased sympathetic nervous response of being so floppy, tachycardia from POTS, palpitations and flushing from MCAS, and brain fog from all three diseases, can also mimic anxiety, so it's hard to separate out what's physical vs. emotional. And to add to this mess, simply having the stress of undiagnosed chronic illness (and being told you're crazy) can cause anxiety and depression. Even unaffected siblings of EDS patients have high rates of anxiety and depression.
So, to ignore the psychological side of things because of a frustrating history simply makes it so much harder to improve symptoms.
I personally have found therapy, mindfulness practices, stress management, hypnotherapy and EFT, to be some of the most successful strategies for feeling better. I would also like to try Sertraline (Zoloft) to see what it could do for my pain, MCAS flares, sleep/fatigue, and mental health.
I did not go to the psychological talks, so I have no notes, but here are the slides:
Psychological Management and Involvement
Maggie Buckley and Maggie Ridgely
Psychological Comorbidities
Alan Hakim (medical professionals day)