The official theme of the 2012 EDNF Learning Conference was Living With EDS. And don’t get me wrong – it was great,amazing, awesome. We learned a lot and I am very grateful for the opportunity to attend. I appreciate the efforts of everyone who worked to make the conference a reality – EDNF staff, volunteers and speakers alike. But, (and there is always a ‘but’, isn’t there?) I have some mixed feelings about some of what was put forth.
If the official theme was Living With EDS, then the unofficial theme was Don’t Let Fear Hold You Back. Which is great and all and I would have a hard time disagreeing with it on paper. I just found it a little strange to be bombarded with that concept because the recurring theme that I kept coming back to after each session was Balance is the Key.
I have to be honest, I didn’t totally get the direction that some of the speakers were taking us. And, to be fair, most didn’t go there and even those who did, I think, would readily agree with the concept of balance. There is a pretty wide range of opinion among the EDS experts – which is somewhat entertaining (particularly when they are all in the same room answering questions) but also somewhat unnerving. I suspect that they would be more in agreement than not, but I heard enough contradictory advice that really made me doubt that. What each speaker actually says and what the listeners actually hear, really matters. And, what came through for this listener was a consistent emphasis on issues and concepts that were, perhaps, not totally helpful and somewhat confusing.
For instance, in the Parents of Children with EDS Discussion Group, which was facilitated by a very knowledgeable doctor/mom who has EDS and which ended up being more of a Q and A with her instead of being a discussion group, a question came up about a basically asymptomatic child with a strong family history of EDS, who was having foot pain while playing the goalie position on his ice hockey team. The answer below came among other answers to other questions like ‘your kids are manipulating you and playing the ‘I am tired’ or ‘I hurt’ cards to avoid doing things they don’t want to do’ and an apparent lack of concern for the child who has had multiple fractures but continues to cheer. While I firmly believe that each family living with EDS must answer the sports question based on their own situation, there being no one right answer, I was a bit flummoxed by this and was stunned by the departure from the cautions we personally have been given by most of the doctors we have seen. I was sitting there thinking about all of the adult EDSers who were irreparably damaged because no one intervened when they were children and wondering why caution was absent in 2012…
The Don’t Let Fear Hold You Back answer to the hockey question: It is true that the initial statement given in response was that perhaps hockey is not the ideal sport for a kid with possible EDS, but that was quickly followed up with the suggestion that you can’t put kids on a shelf, you gotta let them live, just give him orthotics and wait and see what happens.
The Balance is the Key answer (aka my opinion): No, you can’t put EDS kids on a shelf, but as a parent you sometimes have to make really hard, unpopular decisions. At the very least, the child in question should be given opportunities to enjoy a variety of activities, athletic and otherwise – all children should be well rounded and that is particularly crucial for EDS kids. If the time comes when hockey is no longer feasible, the child should have other activities he loves to fall back on. I speak from personal experience: it is devastating to watch a child lose the activity which defines them. Parents have the power and authority to guide their children into the least damaging activities and, for goodness sake, if you know about EDS before your kid has a life altering injury, you have the chance to protect them and teach them how to protect themselves at the same time! A beloved sport does not have to be an all or nothing proposition: you can tweak and make adjustments, avoid competitive versions and so on, but sometimes you have to walk away for your own good. Figuring out which is the right answer at any given moment is a valuable lesson for a child with this life long condition. It really is about finding the right balance – you might have to fight to find that balance, particularly since it is constantly changing but that should be the goal.
As I already mentioned, in the ‘discussion group’ the topic of ‘how do I know when my kid is playing me’ came up. The question involved my kid ‘miraculously’ is able to do fun things, but avoids the not-so-fun things.
The Don’t Let Fear Hold You Back answer: Yes, your kid is playing you. You have to be tough, make them get up off the couch. They don’t get to do anything fun until they manage to go to school all day. I went to medical school, I had 4 kids. You have to push them to achieve. (Admittedly, this is a simplification of what was said, but I don’t think it is inaccurate – at any rate, it is what I heard from this conversation, which goes to my earlier point that what is actually said, matters. I only heard the tough love attitude until a lovely mom in the group spoke up and her comments are shared below.)
The Balance is the Key answer (via the very wise mom who happens to be a reader and who was brave enough to speak up in the climate of tough love): You might have to make adjustments to their schedule so they can do more, don’t necessarily assume you are being played. Shortening their school day can make it easier for them to do both the fun and not-so-fun. Be willing to look for solutions. She and I spoke afterwards and agreed, that for these kids who are really ill, they deserve a chance to have fun and be normal sometimes. It is totally unrealistic to demand that they spend their limited energy solely on school. What kind of life is that? Again, balance is the key. Yes, kids – even sick ones – need limits, but that must be tempered with an understanding of the condition they are living with. As parents of EDS kids, we have just a few years to get up to speed with knowing everything we need to know about EDS so we can teach our children everything they need to know about it before they are grown and have to manage their condition on their own. It is our job to teach them to take care of themselves and when we tell them to just push through, we are doing them a grave disservice. Too many parents come to the EDS diagnosis with unhelpful, clueless attitudes that were passed on from their own childhoods. Often, they don’t fully understand how damaging those messages are to an ill child. They are not lazy, bad, attention seeking or crazy. They are ill and they need help managing this life long condition. Sometimes they need a kick in the butt and sometimes they need a hug. Balance is the key! (Tracy, if I misrepresented your thoughts, feel free to correct me!)
Another instance that comes to mind is Dr. Levy’s talk on ‘It’s Not in Your Head – Or is it?’ He said a number of times: Don’t let fear hold you back… And again, I mostly agree and yet I was a little confused because some of what he said sort of contradicted the typical advice we get. Is it joint protection at all costs or don’t let your fear hold you back. Or something in between?
The Don’t Let Fear Hold You Back approach: The gist of his talk was that pain is hugely impacted by your mind – which is a no brainer (no pun intended) for most of us. He spoke of not allowing fear of dislocating keep you from an activity. That you should not let fear hold you back from living life.
The Balance is the Key approach: I know that reality gets a little skewed for the EDSer and they can dwell in an unhealthy fashion on pain and fear, but sometimes pain still is an important signal to be heeded and sometimes fear can protect us from doing something that could be harmful. Telling an EDSer to ignore pain and fear might be equally as harmful as encouraging them to wallow in pain and fear. I don’t think the answer is one or the other, rather, it is finding the correct balance so you can live to the fullest extent possible. I do not think if you say, if I do that particular activity, I will most likely dislocate and it will hurt, that it means you are living in fear. That may be a practical assessment of reality that leads you to either making a different decision or tweaking the activity in such a way that you can safely do it. On the other hand, you don’t want to look at the world from your bed and say I can’t do anything. I happen to think that is a terribly rare attitude – the vast majority of EDSer want desperately to live to the fullest. EDSers should be taught to listen to their bodies and analyze the risks and make wise, informed decisions so that they can live life fully.
It is true that fear is a real part of living with EDS. There are some very real things to be afraid of. So real, oftentimes, that it can be paralyzing. And, that we are sent such contradictory messages from our experts, is part of the problem. At the same conference, we heard both sides of various arguments. Have surgery, don’t have surgery. Avoid high impact activity, go ahead and play that sport which has injured you multiple times. Rest, push yourself. It was confusing and frustrating at times.
I finally have realized that part of the frustration I was feeling was that there is such a huge range of impact within the EDS population – and any given set of comments was being broadcast to everyone, regardless of whether it was applicable or not. The barely impacted and the severely impacted got the same messages – with the mild to moderate folks getting the most advice. And those bits of advice just don’t always fit everyone. So, the discussions of POTS mattered a great deal to those disabled by it, but were rather meaningless to those who aren’t dealing with it. Discussions of which sports should kids play and under which limitations mattered a great deal to kids who are still well enough to play, but fell on deaf ears for those of us for whom playing sports is a distant dream. EDS treatment/ advice is never, ever one size fits all. And we all need to keep that in mind. The parent of the mildly affected child should cling to the knowledge that not all EDSers are functionally disabled. The parent of the severely affected child should cling to the knowledge that many do get better, particularly with the right treatment. But that is hard to do when you are hearing a one size fits all message and trying to figure out how it fits in your life. And, for those of us whose lives have been violently turned upside down by EDS, it was frustrating to feel that our very real concerns were not fully addressed and even minimized at times.
In part 2, since part 1 is already way, WAY too long, I want to talk about how a discussion of what we know about why some EDSers are so terribly ill would have been beneficial to have at the conference. And probably other stuff like how this balance is the key business is easier said than done, as well.
If you are with me this far, pat yourself on the back and congratulate yourself for plodding through! Do something nice for yourself because you deserve a reward! Part 2 is on the way…