My head is still reeling from this past weekend’s Ehlers-Danlos Learning Conference. Thursday night I had the privilege of performing and speaking and then I spent Friday and Saturday surrounded by knowledge, whether that of some of the leading doctors and researchers in the field or that of the individuals and families struggling, as I do, with Ehlers-Danlos Syndrome (EDS) every day.

Something that I found particularly encouraging was that not only is the research into the physiology of EDS moving forward, but there is a greater embracing of the seemingly peripheral elements that play a large role in governing our overall wellness. For example, at my first conference in 2002 I was struck by the virtual absence of healthy food both in the meals and snacks being served and in the conversations about living with EDS. To me it seemed like a no-brainer to address food in a meaningful way, yet I only met one other person at that conference who spoke about nutrition . . . and I barely spoke to him, because the main social “mixers” were the meals, during which he fled the site to get healthy food. The word “holistic” is used so much nowadays as to render it almost inert, but it really applies here – each aspect of one’s overall wellness and life situation (nutrition, fitness, medications, emotional/mental health, financial stability) is integrated with the rest and plays a role in the overall outcome. This has gone from unspoken to “lip service” to being increasingly integrated into the fabric of the discussions and of the way the conferences themselves are run.

One of the speakers present this year was Dr. Howard Levy (no, not the piano/harmonica guy from Bela Fleck and the Flecktones, at least so he claims), whose talk at the 2010 conference in Baltimore had been a real eye-opener for me then; he gave a talk for all assembled as well as offering a “breakout session” and miscellaneous commentary at various Q&A events. I did not attend last year’s conference in Cincinnati, but Dr. Levy referenced some controversy over comments he made there surrounding the need to address mental health as part of a truly effective plan for managing EDS (and, one might reasonably extrapolate, any physical challenge).

I was initially taken aback by the notion that anybody would be offended by the mention of mental health or the suggestion to seek counseling. Looking at it objectively, it makes sense that there would be this resistance from a couple levels. One, more globally, is that the human race still has some work to do in order to thoroughly de-stigmatize counseling and get rid of the notion that it is for the weak and/or crazy. I feel like most people could use one sort of counseling or another with a skilled practitioner, but not everybody feels this way (this is, of course, coming from somebody who is surrounded by people working through various sorts of trauma; my cats even have PTSD).

Folks with EDS, meanwhile, are particularly sensitive to the subject as SO many of us have been accused of malingering, hypochondria, exaggeration, opportunistic fabrication and other forms of “it’s all in your head.” Many people I know in the EDS community have been as scarred by accusations and skepticism and dismissal as by any of their physical symptoms, and there was even a brilliant talk at the conference by Dr. Alan Pocinki on the various ways in which people can be diagnosed with psychiatric disorders due entirely to the inadequate treatment of physical symptoms stemming from EDS. With or without EDS, most of us can relate to those moments when we are upset for a genuine reason and thus react with hostility when someone insinuates that we need to manage our anger or frustration, something that even if totally valid can feel like a dismissal of the legitimacy of the root cause for our being upset in the first place.

Ultimately, though, Dr. Levy’s point is not only valid, but essential – indeed, it would be irresponsible of him to hold that observation back simply for fear of rubbing folks the wrong way. I found myself thinking back to the first psychology course, and specifically to learning the actual definition of “psychosomatic.” I had always thought it meant “it’s in your head,” but in fact it means that it originates from your head, something that often results in legitimate, measurable physiological outcomes. I would be pretty shocked if anyone reading this had gone his or her whole life immune to this phenomenon. When you’re stressed out for whatever reason, it affects your joint pain, your GI functioning, your ability to stay hydrated, your heart rate and blood flow and so on. If you have never stepped back during a “freak-out” and objectively observed the changes in your body, I suggest doing so (and if you’ve never freaked out, then I suggest you come and give me some meditation lessons).

When I was in my mid-to-late 20s, I really felt the full weight of what EDS “meant” for me (limitations to my career, to my recreational activities, to my capacity to find respite from chronic pain) and that led me to seek counseling (therapist 3 of 4, for those keeping score at home). The most resonant thing I took away from that session was the distinction between pain and suffering, two words and concepts that are often (but erroneously) treated as synonyms.

From this perspective pain is a thoroughly objective phenomenon – receptors are triggered in your body and sensations result. Suffering, on the other hand, is a completely subjective phenomenon – we emotionally process our situation (whether our global life situation or the moment at hand) as being negative and respond accordingly. The “negative” side of this is something for which most of us needn’t look far to find examples. Have you ever seen people whose suffering seemed to outweigh the gravity of their situations? Have you ever thought “geez, why are you so upset over THAT?” or “you think YOU have problems?” We all understand that subjectivity.

What I am fortunate to have figured out during that pivotal moment in my 20s, though, is that this subjectivity can be used as a force for good. That is, it is equally possible (and for all we know maybe equally common and just less dramatically visible) to have a level of suffering that is LESS than what one would expect for a given person’s level of adversity, and that includes physical pain. Managing pain is an important and medically necessary step for someone with chronic issues, but managing suffering is at least as important insofar as we are ultimately measuring quality of life.

I spent much of the two days after hearing Dr. Levy’s talk contemplating this phenomenon and how it pertains to the wellness of not just EDS sufferers, but most people. As if the universe were demanding I write this post, I had two experiences over the weekend that underscored this as not just an important abstract concept, but as central to my own life. First, while in Providence for the conference, we stayed with our daughter and son-in-law and during our conference downtime had a truly delightful time with them. Periodically I would step back and check in with my body – yep, plenty of pain, no doubt about that. But I was too busy being stimulated and happy for that pain to turn into suffering.

Meanwhile, we came home late Saturday and Sunday I exercised for the first time in days . . . and promptly threw out my lower back (L4, for those still keeping score at home). What I observed in myself for the remainder of the day was the welling-up of all sorts of negative emotions beyond the objective reality of the day’s back pain and impairment. WHY did I exercise without having been properly vigilant with my lumbar stabilization exercises for the previous couple weeks? WHAT will happen to my back and to the work that maybe I won’t be able to do as a result? HOW am I still going to go away with my wife and kids for the already-brief vacation we’d planned? WHAT will this mean for Kate, who will now have to compensate for my incapacitation? WHAT kind of a fraud am I for speaking at the conference as if I’m a success story and then THIS happens? If your heart rate isn’t going up a little just from reading this, then you are either very grounded or have a heart of stone.

The thing is, all of these thoughts are subjective. I’m “enlightened” enough at this point that I don’t BELIEVE these thoughts when they come up, but not so much that I circumvent them entirely. If I just let them run rampant, I would have spent the evening (and beyond) in a pit of suffering. As a result, my whole body would have been tensed up, my heart rate would have elevated and in general my body would have had a lot more to endure. As it was I breathed through these thoughts, vented a few of them and just let myself accept the reality of the moment and rest. I got a great night of sleep. Did I feel better in the morning? That’s fairly irrelevant, but what I CAN say is that I felt a hell of a lot better than I would have if I had spent the night bemoaning my lot in life or wallowing in shame over my fragility. Been there, done that. It’s no fun and accomplishes nothing good.

Like any important life lesson, this isn’t easy or instantaneous to implement. But part of having any kind of physical adversity IS in your head . . . and from your head, it moves right back into your body to fester and wreak havoc. Certainly those with chronic issues like EDS have enough havoc! Thanks for the reminder, Dr. Levy – both from me and on behalf of anyone reading this who may have pain but can begin to take command of suffering.


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