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who actually believe that you do have EDS, but won’t admit, even to themselves, that their knowledge is scanty and outdated at best.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…. 🙂