When the time comes to say “no”

Along with my daughter’s connective tissue disorder (Ehlers-Danlos Type 3) comes a variety of other health concerns. They include among other things polycystic ovary syndrome (PCOS), hypothyroidism, insulin resistance, and cholesterol problems. It seems I always have to push to make anything happen on a medical standpoint as she is only 16 and still considered by many as a “pediatric” patient. What better excuse – in a remote area – but to be told one is not specialized in pediatrics. She also suffers from severe anxiety.

Because her latest glucose tolerance test (GTT) was positive, I asked that she be seen by a nutritionist. I figured that since we are not evaluating the results any further, we should at least make sure she eats properly. At the same time, since my daughter has been inquiring about becoming vegetarian for years I figured she could discuss this with the nutritionist as well.

A week prior to the appointment, my daughter decided she wanted to lose weight as she had put on 20 pounds in the last year or so because of her medications and other factors. I noticed that she was barely eating anything and writing everything down in a journal. Concerned, I mentioned it to the nutritionist in the presence of my daughter who had never before shown signs of an eating disorder. Big mistake.

The nutritionist immediately concluded the worst possible outcome and without looking into my daughter’s overall condition, scheduled her to be assessed by the eating disorder clinic. Maybe there was cause for concern, but honestly, the last thing my daughter needed was lack of compassion and to be treated like a nut case (I mean by this people making all kinds of decision for her without her being consulted). The whole thing turned into a big mess – we were both being evaluated. I will spare you the details of the crazy event because there really isn’t anything constructive about it.

The second and last meeting with the nutritionist was disturbing. My daughter has an irregular feeding schedule because she is sleeping all the time. We all know that that is not helping her metabolism, but there are days when she feels so weak, she just wants to sleep her life away. And I must say that I understand her. Regardless, the nutritionist was telling her “Well, you are sitting in front of me right now which means that you have the strength to sit up and eat at the kitchen table at a regular schedule – morning, noon, and evening…”. Her ranting went on and on about her making more efforts and changing her habits. At that same moment, my daughter was visibly suffering, fidgeting  trying to feel comfortable in the straight chair she was sitting in with her legs hanging, the skin of which I knew was mottled in blue under her jeans. I kept trying to make her (the nutritionist) understand that my daughter has a connective tissue disorder and that she suffers from a lot of pain and fatigue which often causes her to be dysfunctional or nonfunctional with regards to her regular daily activities, but sill the message was not getting through. The nutritionist kept trying to find arguments. It was ridiculous and simply painful until the end.

As my daughter and I stepped in the elevator, we looked at each other and the tears started running. So many years of misunderstandings; so many years of pain. It was at that moment that we said “We don’t that”. And that was it.

I ended up calling the clinic to say that my daughter would not attend any further meetings and that if anything was to be done, her condition needed to be properly assessed once and for all. I also added that the nutritionist lacked essential knowledge and that the situation was detrimental to my daughter’s health condition.

I don’t know how many times any of us feel helpless when confronted by decisions made by healthcare workers with little or no knowledge, or simply lacking essential medical information regarding our own health. I know that standing straight and saying no to an obvious misunderstanding on a professional’s part can only open the doors to better things.