"Suffering the Slings and Arrows of Outrageous Fortune"

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…

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Comments on: "Balance is the Key Part 2" (6)

  1. Beth,

    Very well said. My kids are probably on the milder side of the symptom range and I wouldn’t have been able to stomach the don’t let fear hold you back message. These are my children and the fear is always there – always. Everytime they try something new, something that other parents can take for granted the fear is there. That message would have frustrated me.

    I am so happy to hear about all the things Em has been able to get through this summer. EDS makes them so much older than they should be. I hope she was able to enjoy the summer. Summer storms are rough on all of us.

    I agree balance is the key – finding it is the hard part. My prayer is that we can teach our kids how to find the requisite balance and how to be happy despite EDS, Chiari, POTS etc. Please let Em know that she is truly an inspiration and she will go wherever she wants to go in life.

    Stephanie

    • Thanks Stephanie! I figured I would not be alone in my frustration! If I could go back, I would have spoken up at the time, but there was so little time to ask questions and I have a feeling that contrary opinions would not have been very welcome! Not to mention that it took me into the second day to really catch the pattern and, by then, it was too late. Grrr.

      Anyway, I totally agree with you – I just want my kid to know that she can figure out how to be happy and live with EDS, managing all of the stuff that has been dumped on her. Living with fear is a fact of life for us, but it can be balanced with hope and positive actions. That is the only way we can make it through the day! I just think that balance is a more productive message than what they were offering but what do I know? 😀

      I actually think the ‘don’t let your fear hold you back’ message is just about all ‘they’ have to offer us. Which is sad because it is not very helpful! It is easier to say ‘don’t give into your fear’, than to admit ‘we have no answers for you’. I might be a little cynical at this point, though! And I definitely have a chip on my shoulder regarding Dr. D being excluded from the speaking roster.

      But…it was a great experience overall and I am glad we went. I just could have done without the patronizing! 😉

  2. Stephanie said:

    I have been meaning to read up on the Driscoll theory. The first part of this year wore me out mentally and physically. Once we got through all of our appointments I shut down. As a friend said I was tired of telling our story. Both boys were put on Diamox this spring. We only use it when symptoms appear but it has helped a great deal. Alex has been on Zyrtec since he was two and all three are on a regular regimen of Zyrtec which makes me wonder …

    Stephanie

    • Well, I totally get the being exhausted and shutting down. Totally! I certainly have had my share of that this year. And part of the exhaustion came from fighting all of our doctors about the Driscoll Theory!

      Obviously, Diamox/ increased intracranial pressure is part of it and you are already on to that. The mast cell part is very interesting – if you need info, I can point you in the right direction. It is harder to read the Driscoll Theory now because it is updated to include part 2 (which is really good and goes deeper into the issues) and is now in the form of a book to buy on Amazon. I have it for the Kindle, but it is $22 to purchase a hard copy – not sure if it is still available for the kindle. I understand why she did it that way, but it does limit access and it is a little frustrating.

      BTW, how are you and the kids doing? Everybody doing well this summer? I hope your summer was restful and restorative!

  3. Jeshyr said:

    (I just found your blog via prettyill.com’s facebook post)

    What you say makes tons of sense to me.

    I wasn’t at the conference or anything, but as an adult with EDS and the “whole nine yards” (dysautonomia, mast cell issues, etc etc.) I am friends with tons of other adults who live with EDS. We regularly remark amongst ourselves that almost all of us have been severely damaged by overdoing it – either with directly damaging joints, or by constantly trying to push through severe fatigue/pain symptoms to the point of making ourselves much worse in the long term. In those many years I have only come across a single adult with moderate-to-severe EDS who said they had been damaged by being too timid and frightened to do things that they actually were physically able to do.

    The other thing that many of us have had trouble with is not being believed by adults around us, when we were children. I’m sure that yes, some kids do play up to get out of chores, school, or whatever, but unless you have really REALLY good evidence this is going on a lot (every kid does it a bit – it’s normal!), please err on the side of believing in your child!

    • Hi! Thanks for dropping by! (And thanks for confirming the point I was trying to make in this post!)

      The conference was good, don’t get me wrong. It was a great experience, but I really came to understand that some of the speakers and powers-that-be had no great answers, particularly for the hardest questions like dysautonomia and the neurological issues. ‘Push through’ is not the answer but that sure was a motivational point that was made a lot. I could have tolerated that attitude if it were just one or two speakers and the majority talked about balance, but it was the opposite.

      I think you are so right about EDS kids not being believed by parents. My kid knows I believe her; if I don’t, who will? She deserves someone to be unequivocally on her side. Also, I strongly feel that these really ill kids deserve a chance to have a bit of normal now and then. If she has to store up her spoons to be able to go visit a friend or go to a movie, I am surely not going to make her do chores before she goes, just to prove a point. Life with EDS is often not pleasant at all and a person has to be able to have fun/ be normal or there is little point in living.

      Anyway, I could go on and on, but I will stop there! Thanks again for commenting!

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