"Suffering the Slings and Arrows of Outrageous Fortune"

Dear Dr. B,

I know we have been seeing each other for a long time – you have been my kids’ doctor for 16 years, in fact. Because you have been such an fixture in my life, I don’t quite know how to say this, so I will just come right out with it:

I am breaking up with you. It’s not me, it’s you. I am just not that into you anymore. No, I really don’t want to remain friends. I am quite sure there are other fish in the sea and I am willing to take my chances.

I stayed with you all of these years for the sake of the children, thinking that consistency would be good for them and for me. It was rocky at times – we had our moments, even early on. But, when it was good, it was really good. Those times that we actually worked as a team felt so right. Unfortunately, it hasn’t felt right for quite a while now and I need to move on.

I have to be honest: I am sick and tired of doing all of the work in this relationship. For years, long before EDS came into our lives, I have been the one who researches and brings my findings to you, hoping you could help with whatever was going on. Let’s be honest, I have figured out pretty much every single issue my kids have ever had and had to go out of my way to prove it to you, each and every time, when you should have figured it out on your own without me saying a word. And I am getting darn sick and tired of paying you for this privilege. That you abuse me with your rolled eyes and derisive snorts when you are in your I-am-the-doctor-and-you-are-just-a-silly-little-mom mode is wrong and I am done taking your unprofessional crap.

Then there is the inescapable and unforgivable fact that you missed some really important things that were right in front of your nose the whole time. Like, for instance, when you routinely told my kid for years that she was ‘obscenely healthy’ although she had a serious genetic condition that you should have caught and didn’t. Like the fact that every single time the nurse recorded Em’s head circumference from the time she was 6 months to 2 years old, the evidence of externally communicating hydrocephalus was right there and you ignored it, to my child’s everlasting detriment.

I have had a resentment regarding these and other issues that initially just quietly bubbled up at times, then it began simmering – now it is boiling furiously. I will no longer give you a pass for what you missed. You had a chance to make my kid’s life better. You didn’t. Now I have to try to clean up the mess you made. I will do that without you. I won’t sue you, although I am starting to think you deserve it, but I will forever resent you for what you could have done and didn’t.

Our time together Wednesday was the last straw – you had one last chance and you blew it. I bring my daughter to you, worried and requesting help. You know she has a whole lot going on medically, not that you have contributed much to her care. Her vitamin D level is a 6.1 – severely, dangerously deficient – and you give her a measly 2,000 IU of vitamin D a day. 14,000 IU a week, when she should be taking 50,000 a week to try to aggressively bring her level up. You were  absolutely right about one thing:  “this process will take a while”-  obviously,  if you only give her a quarter of what she should be given, she will never get to a therapeutic level, she will continue to feel horrible and be at risk for serious health issues. Another 6 months or more of her life wasted. Thanks for nothing. Again.

When we talked about GI issues and discussed her poor absorption and  how she has lost 20 pounds because she has a very poor appetite and nausea – you tell her that she is in the upper range of weight for her age so she has room to lose weight and there is no need for concern. (Which is total nonsense in every way) The worst is this: Translated into the language of a 13 year old girl: You are totally, horribly fat. Thanks so much for the opportunity to develop a poor body image based on a thoughtless, passing comment – we totally needed that on top of everything else. The everything else being gastroparesis, which I am not positive you have ever heard of.

Then there is the fact that I mentioned that my child has pectus carinatum, her ribs and back are wrong and she swears her leg bones are not right – in the context of severe vitamin D deficiency which comes with softening of bones and bone deformities. And you just look at me. And say we just need to supplement her vitamin D a bit. You never even offered to examine her. You allowed a child with a debilitating medical condition to walk away having never examined her. I have no polite words for what I think of this.

When I asked for a referral to a pain psychologist – someone who specializes in chronic illness to help us navigate this journey we are on, you tell me to find someone who can help – you would be happy to refer us, but you would have no idea where to start looking. Really? Isn’t that what I am paying you for? Isn’t that your job? To know precisely where to start. You are the doctor and I am ‘just’ the mom. I come to you for help with the things I can’t do on my own. This isn’t the first time you have let me down – it is, however, the last.

I could go on and on, but, really, what is the point? This has been coming for a long time. We have irreconcilable differences and we simply need to part company. I deserve better, my daughter deserves better and I promise you, we will find it elsewhere. I suspect that you will be happier without me anyway. We have stayed together out of habit and it is time to make some changes.

Lest you think I do not see my own part in this, let me be clear-  I know I have some issues that I have developed while we have been in this relationship: I truly am not the same woman I was when we first met. I have developed some major trust issues and I have been reluctant to ask you for help at times. I sometimes do not communicate well enough with you. I tend to give up when you are being difficult, rather than hanging in there to fight for us. But, now I realize that is because I just don’t trust you to listen or to know enough to help us.  And I also know that you are to blame for most of the baggage I am lugging around right now. I have enough to juggle in my life and I cannot carry anymore. So, I am going to find a doctor who will help me carry the load, instead of adding to it.

Please do better with the next EDS kid who walks through your door. You could have learned so much from Em and could have become a better doctor. This is your loss, you know, not mine.

Sadly and very sincerely,

Em’s Mom

Comments on: "Breaking up is [not] hard to do…" (6)

  1. imananomily said:

    Awesome!! You did a great job.

    • Thanks! I intended this post to be funny but it ended up being a rant instead. At any rate, I feel a little better after writing it!

  2. That doctor is very lucky I was not there. As I am under 18, and all felons will disappear on my 18th birthday, I would… not have been very nice. He called my best friend fat, and I am thisclose to finding out where he lives and probably doing some vandalism. I am super ticked off with him. School appropriate words cannot express my anger right now.

    • Micaela,
      If you were there, we would have been in trouble together! I am super ticked off with him too and have said some things not worthy of print, so I totally get where you are coming from!

      In fairness to him (not that he actually deserves it) he didn’t actually call Em fat. He just said she was in ‘no danger’ because she was in the upper range for her age. That is total nonsense, of course, and he is an idiot. But, you say something like that to a ‘normal’ teenage girl and she will automatically hear ‘you are fat’. Good thing Em is not a normal teenage girl and has far more sense than he does. 😉 If she had taken his words seriously and started thinking she was fat, I would hunt him down and you and I could hurt him together!

      You are a good friend, Micaela and Em is lucky to have you on her side. Have a great day!

  3. Hello, I am new to your blog, as my son met your daughter at the conference this summer. I have been reading many of your posts and feeling like I could have written them myself about our situation….even this one, as we had a doc for 6 years that was exactly the same. What a waste of precious time! I am glad you fired him, we fired ours too.
    We have been going through a very difficult time for about 4 years, and now it is even more difficult as we move into MCAS treatment and are wondering about so many other issues. Reading your blog has helped me feel less alone….we fight for our kids the same way. Hugs, Terri

    • Hi Terri!
      I am always so sad when someone says they can relate to our story – but so many EDS families have very, very similar experiences. I try not to get bogged down in how difficult things are and focus on remembering that there is always hope – easier said than done some days! Doctors drive me nuts – we need them to help make life better and they usually just make me mad! MCAS is such a big deal and so poorly understood – I know it is a big part of Em’s challenges, but it has been a long road to get to an expert. We go the 26th to see Dr. Abonia at Cin. Children’s. I am cautiously optimistic but not overly hopeful, even though I have heard good things about him.

      Em had a great time at the conference – meeting other kids like her was a wonderful experience! I hope we can go again next year, depending on where it is.

      Thanks for reading and commenting – it is so nice to hear that what I write about helps others going through the same thing. Hearing from others like you makes me feel less alone too!


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