Starting where I left off in Part 1…
So, it took me a few days to identify exactly why I felt uncomfortable at certain points during the conference – this whole ‘don’t let fear hold you back’ thing was a little perplexing to me. It seemed so absolutely clear to me that ‘balance is the key’ that I was quite frustrated at times that we were being given a different message. Once I figured out that most of the advice being given was most applicable for the mildly to moderately affected EDSer and not terribly helpful for the severely affected, like my kid, I became even more frustrated.
Before I go any further, let me say that I don’t mean to be [too] critical of the EDNF or the roster of speakers. My family benefited greatly from the conference and I am deeply appreciative of everyone who contributed. And I totally get that the individuals who spoke are not just doctors, they are humans, and had real limitations:
- Time Those 45 minute sessions flew by. The speakers had very limited time in which to share their knowledge with and answer questions from a very intense crowd. There was simply not enough time to say everything that needed to be said, so the speakers had to just do the best they could.
- The Audience Any speaker has to know their audience and speaking to the EDS population is no exception. The majority of people attending the conference, by default, were on the milder end of the spectrum and that is who was spoken to for the most part.
- Not enough research While the roster of speakers included the best minds working on EDS and who are, by all accounts, very dedicated to the EDS cause, the fact remains that we just don’t know everything we need to know about EDS to effectively treat it. The speakers are not to be blamed for that – they are doing the best they can with what they have. Until we know more, we are all groping blindly for answers.
- Caution They have promised first to do no harm to the patients they are trying to help, and so, they parse their words and try to give advice that makes sense while not rocking the boat. Of course, the definition of caution seemed to vary from individual to individual, so that wasn’t terribly helpful.
And there my patience and understanding wanes. Because the big issue at hand here, I believe, is a thorny one that isn’t being addressed for a variety of reasons. The biggest of which is politics, which I have no tolerance for whatsoever. I don’t want to delve into the politics of this and name names, but I know for a fact that it exists. I’d rather focus here on the results of this attitude…
There are lots of people with EDS who manage pretty well. They have issues that they manage and they get on admirably with their lives. The message of ‘don’t let your fear hold you back’ probably resonates, I think, with these folks.
But, there is a significant segment of the EDS population for whom the condition is not easily managed – they have a nasty constellation of symptoms that are challenging and fairly resistant to treatment. The doctors have had precious little to offer these patients who are so very ill up to this point. Autonomic Dysfunction? Drink lots of water and up your salt intake. Severe, intractable headaches and other neurological symptoms? Got to be craniocervical instability – you need a fusion. Hmm, it didn’t work well? Ah, that is unfortunate. About the rest of your weird symptoms? No clue, sorry.
Because there has been little to offer this group in the way of effective treatment, they get essentially ignored. Which I suppose was perhaps understandable when there was nothing to offer them, but since those elusive answers are now within our grasp, thanks to the Driscoll Theory, I have a real problem with this group being swept under the rug.
Dr. Diana Driscoll has been working tirelessly and has hit upon real answers which she has generously shared with the EDS population. Many of us have experienced the life changing answers she has shared – in the form of Diamox, mast cell treatment and CCSVI – and would have appreciated the opportunity to discuss it at the conference. It would have been lovely if we could have heard Diana speak, to ask questions, to have a chance to discuss it. To have these issues addressed by anyone instead of ignored. But Dr. D was not invited, the desperately needed answers were not shared or even discussed, we were just told to not allow our fear to control us and this group of very ill EDSers were swept under the rug. Again.
If you tell me, the mother of a very ill child, to not let my fear hold me back , I am going to look at you like you are nuts. I will not thank you for your homey wisdom and trite cliches. Seriously.
As are so many others like her, my kid is dealing not just with constant, painful dislocations and high levels of pain that are so common in EDS, she also has debilitating neurological and autonomic dysfunction symptoms (admittedly vastly improved since starting the Diamox), life altering food and environmental sensitivities (admittedly vastly improved since starting the Zyrtec/Zantac combo) that indicate mast cell disease, ‘typical’ EDS GI motility issues, anxiety, pectus carinatum, TMJ issues, eye issues and the list goes on.
We – SHE – deserves answers and if you don’t have the answers to our problems, don’t patronize me by saying I should rise above my fear. Don’t tell my kid she should push through and ignore her problems and not be afraid. Because the advice to not let fear hold us back starts to sounds an awful lot like ‘you are imaging how bad it is’. Like ‘you are exaggerating the magnitude of your troubles’. Like ‘it couldn’t possibly be that bad’. It feels pretty darn condescending, to tell you the truth. We have enough disbelief from the medical community, we don’t need it from our EDS experts.
In Part 1, I talked about how balance is so important for EDSers in addressing their myriad of problems and I am truly convinced it is the key. Well, now I am going to suggest that the medical folks who are going to bat for EDSers to apply a little ‘balance is the key’ to their thinking. Why not look at the possibility that Dr. D has hit upon the answers to help us? Why does it matter who figured it out if people are being helped? Is there not room for diverging opinion? (You proved that there is on Saturday when you all sat on a panel for the Q and A and disagreed with one another right and left. Why can Dr. D not be part of those diverging opinions?) A little balance would do us all a world of good in this matter, in my opinion.
Hmm, for that matter, I think ‘Don’t let your fear hold you back” could apply here as well. Maybe they need a dose of their own medicine… I get that they are being cautious for good reason, I really do. But, the same people who are proponents of cervical fusion and appear to view it as having approximately the same risk as eating candy, are too afraid to consider or even discuss a little pill which has been used for years and is helping people avoid surgery. That seems a wee bit insane to me, I must confess – that the least invasive option is demonized and the most invasive option is lauded makes no sense to me whatsoever. Is fear holding them back? Or is their concern valid? Perhaps, and here is a novel idea, we should be able to discuss it like adults?
I got a lot of good out of the conference and I don’t want to minimize that, really I don’t. It was a wonderful experience overall. With anything in life, there is both good and bad. But, this whole ‘don’t let your fear hold you back’ thing clearly has stuck with me. It stuck with my daughter as well and I have to say that I am not loving that. She and I have talked extensively about the conference and she has shared that her experiences were similar, so I don’t think I am really on the wrong track here.
All I want is for the powers-that-be to acknowledge the real possibility for viable treatment options for the most challenging problems EDSers face. To acknowledge that Dr. D is on to something and simply be open to considering her work. A little bit of balance. And for their fear to not hold them back from offering help to those who really need it. I don’t think that is too much to ask…