"Suffering the Slings and Arrows of Outrageous Fortune"

On Vulnerability

After our recent bad experience with the opthamologist, I have been thinking about how vulnerable we are when we go to a doctor and how easy it is to be hurt. We open ourselves up in a profound way when we walk into that office seeking help from a doctor (really, any medical professional). Whether we are seeing a new doctor for the first time, seeing a doctor who doesn’t quite get us or even a doctor we love, we put our hearts and health on the line every time we walk through the door.

Sadly, every EDser has horror stories of a traumatic experience with a medical professional, whether it be a GP, a specialist, ER doc, PT or some other medical person. Bad experiences permanently scar and influence the way we approach our medical care in the future, which is truly unfortunate for an EDSer.

Finding proper medical care for EDS is challenging at best and near impossible at worst. Being told you are crazy, attention seeking, a hypochondriac, or liar (or that you are stupidly making all of the wrong medical decisions for your child) tends to make a relationship with your doctor somewhat problematic. Then there are the doctors who  can’t bear to reveal that they don’t have a clue what ‘EDS’ even stands for when you mention it. Or those who actually believe that you do have EDS, but won’t admit, even to themselves, that their knowledge is scanty and outdated at best. Assuming you can find a compassionate doctor who  1) knows how to pronounce Ehlers Danlos Syndrome, 2)actually has some knowledge about it, and 3) believes you – he very possibly won’t have a clue how to help you because of the complexity of the syndrome. It is pretty darn discouraging.

If a doctor is honest, he would admit that I, a mother caring for a child with EDS,  have a much deeper understanding about what life with EDS is actually like than he ever could have after reading a paragraph in a textbook 20 years ago – but few of them are able to acknowledge that and are happy to perpetuate the myth of their omniscience. Add in the fact that we are actually paying to be treated this way and it is no wonder we want to give up.

And this is where the vulnerability comes in. We need them.  At the least, an EDSer’s ability to live a functional life is at stake and, at worst, their very life is on the line. The more severely you are affected by EDS, the more you need the doctors and the more proportionately difficult it is to get answers. Because EDS affects every single body system, the EDS population is desperately in need of competent medical care. Sadly, the very people who most need the help of a doctor, struggle unceasingly to obtain anything resembling help from the medical community and are routinely treated like garbage.

Each negative experience lays down a layer of hopelessness, of helplessness; frustration and anger set in and, eventually, we have trouble trusting anyone in the medical profession and it seems pointless to even hope that anyone will help. While I know there are great doctors out there, they are few and far between.  And that is incredibly frustrating. And lonely. And terrifying. I would estimate of the medical experiences we have had in the last 2 years, probably about 85% fall in the categories of ‘just worthless and a total waste of time and money’.  10% were ‘horribly scarring’. Maybe 5% were actually ‘good’. That is not an encouraging track record.

More than anything, I wish I could have one doctor who I trusted, who I could tell my worries to and who could shoulder some of this responsibility I bear. Just one compassionate, wise, thinking doctor, who is confident enough to think and work outside of the box; he doesn’t even have to be an expert, if he just had enough knowledge to draw some conclusions or to search for answers – he would be perfect. But I have no doctor that resembles that description.

I have several doctors appointments I really need to make for Em, but I am sort of paralyzed at the moment – our bad experience with the opthamologist a couple weeks ago has really thrown me for an uncharacteristic loop. It gets harder and harder to put myself out there and push for my daughter to get good care from people who just don’t get it and don’t seem to care. It really is a matter of behavior modification – reward and punishment shape our behavior. When you experience pain in response to a given behavior, you are much less likely to repeat that behavior. So, every time we have a bad experience with a doctor, it is that much harder to try again next time because we want to avoid the pain we know is likely to come.

I know I have to move past the bad experiences and try to make progress. I know I have to be relentlessly optimistic and tell myself that the next experience will be better than the last. I know I have to give the next doctor a chance to be ‘the one’ and to do that I must make myself and my daughter vulnerable. But it gets harder and harder to do so.

I don’t like being vulnerable with people I know will hurt me, but in this case, I don’t really have a choice and that, I suppose, is what is messing with my head. Perhaps taking a bit of time to get my head on straight will help bring the perspective [and courage] that I need. Writing about it seems to help as well, so I think I will be able to give it another go in short order and maybe even make a couple calls today. Or maybe tomorrow…. 🙂

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Comments on: "On Vulnerability" (7)

  1. imanenigma said:

    Well said Beth!! I recently had a bad exp with an orthopedic dr. he didn’t bother to do an MRI when I was having severe pain down my right leg. Thankfully (although I second guessed myself at first) I contacted my neuro surg and got an appt the next day, an MRI that very afternoon. And the next morning I was back with my neuro and, wallah!! my low back is in BAD shape! One call to my primary, his office is off the list of my “referrals”. I am grateful that i have finally found a dr who “gets it.” It took a lot of searching, but boy am I happy to have found her!! One thing I learned, and it holds me together when I meet idiots, for lack of a better term. WE pay THEM, just as you said, so if they dont treat you right, FIRE them! I do. Sometimes I have to travel a bit (one of my drs is over an hour away) but its worth it. Keep your chin up, the sun is out there, and so are the right drs for you and your daughter. 🙂

    • Hi imanenigma,
      Thanks for your encouraging words!

      “it holds me together when I meet idiots, for lack of a better term”

      Honestly, calling them ‘idiots’ is about as polite as I get most days! I think my real issue with this latest ‘idiot’ is that I really liked him the first time we saw him. He really impressed me then, and in the second visit just did an epic fail as far as I was concerned. And then I start doubting any doctor that I like, knowing he could end up as the village idiot like some of the others that I once liked. It is a daily challenge, isn’t it! One good doctor can make all the difference, though, so it is important not to give up.The optimist in me always whispers that a good one is just around the corner, but sometimes the pessimist in me just needs a break!

      I totally agree that if a doctor displays idiot tendencies, he needs to be fired – immediately. They do work for us and deserve firing if they don’t live up to their part of the contract! I don’t think most of them realize that and they probably would perform much better if they did!

      Anyway, good luck to you and thanks for commenting!
      Beth

  2. Hi, Beth. Oh, dear. You described our fight and search to a “T”. We have had mirror experiences in many ways. We are vulnerable in part because we trust and assume that we’ll be trusted in return. It’s a smack in the face to be labeled a problem, etc. We have given up on an entire university medical center. You have expressed the frustration and, at times despair, very well.

    The chaos has eased in the past 6 months as we found Dr. Abdallah for POTS/NMH. We found an understanding physiatrist.which lead to a great physical therapist. But I just “fired” our GP. I’m a loyal sort, want to keep giving “one more chance” but am learning that it’s ok to move on if staying with one dr. isn’t in dd’s best interest. We’re eying his colleague but I feel almost disloyal in going to him. Boy, this really does push us out of our comfort zone, doesn’t it?

    Thinking of you and praying that you’ll find your team soon.
    Anne ie, CarryOn on the Inspired board, and mom to SomethingHoldingMeTogether

    • Hey Anne,
      It is such a fight to find good care – I truly wouldn’t wish this battle on my worst enemy, so I am very sorry you have had similar difficulties. It does seem to be a a common story when dealing with EDS, unfortunately. The constant search for a doc who will listen – who knows anything about EDS – seems endless and is so frustrating. I guess when it is your kid that is being mistreated, all bets are off and we do whatever we have to do – but it can definitely be uncomfortable! To me, the most important thing I must do is help my daughter learn how to manage her own health in the future. So if a doctor is a jerk and does her wrong, I have to show her how to make a rational decision to move on – but it is tough sometimes! Our pediatrician is on the bubble right now and, if we have to fire him, we would probably end up going to another in the office, so I totally understand your discomfort.

      Anyway, thanks for commenting! I am sorry you have had struggles with your medical team but am very glad to hear you are making good progress – it gives me some hope that it can be done! 🙂

      Beth

  3. […] On Vulnerability « Our Life with Ehlers Danlos Syndrome. […]

  4. Shelby said:

    Hi. Oh wow. yes. I have carried the burden of these exact feelings alone for years, so thank you for writing that. It is actually kind of deflatingly depressing in a way that just stalls you so deeply, but you do a good job of describing it. At times I have only been able to half-heartedly attempt to get help for something (sometimes just letting someone believe whatever they want or even myself just presenting as something else just to get any help at all), at times I have been able to muster up another big push (right now at a point where I do not even know if I have it in me for another one), & then there are the times where I will go for even a couple years doing absolutely nothing, because I just cannot take being treated like that or have no more in me to try & overcome all of “their” issues just to be heard! Maybe you can share this with your child one day, so they will understand that the difficulty for you is very real and that you did your very best with all you had in you.

    • Hi Shelby,
      Thank you for your kind words but I am very sorry that you can relate to this post. Finding decent medical care is, I think, the single hardest part of EDS. The pain and suffering would be difficult even if perfect medical care was easily accessible, but is magnified exponentially when the doctors are so horribly unhelpful.

      Good luck to you – I hope you can find the strength to keep on striving to get decent care. There are great doctors out there – it is just hard to find them! It is helpful to know that you are not the only one struggling. Thanks for commenting!

      Beth

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