Been ruminating about the state of our relationship with our pain doc. I am wondering why some patient/doctor relationships have to be so adversarial and if any good can come of those that are – or if they ever can be repaired to the point of being positive. I have also done a little soul searching to see if there is the tiniest chance that the fault lies with me and not the doctor. After much thinking, I don’t believe I am the cause of the problem here. There are other doctors that I like very much and get along fine with. Others annoy me at times, because they don’t quite meet my expectations, but I don’t think of them as adversaries – I try to figure out how to work with them. Yes, we have a chip on our shoulder when it comes to expecting proper treatment but we try to be cooperative and are more likely to walk away than be confrontational. So, I don’t think I am totally to blame for the poor relationship with the pain doc – particularly since I thought he was awesome the first time we saw him. At any rate, it takes two to be adversaries so I cannot be the only one involved here.
So, this one doctor (and most, but not all, of his nurses) is a problem because: 1) He clearly doesn’t know as much about EDS as he thinks he knows and often tells us things that we know to be incorrect, which makes it very difficult to believe in the treatment he offers. Some of the things he suggests are just ludicrous for an EDS patient and are downright dangerous. The doctor who knows a little about EDS is more dangerous than the doctor who knows nothing about it at all. 2) He has regularly hurt Em while examining her and done so pretty cavalierly. This makes it nearly impossible for Em to trust him and feel safe. 3) He lectures condescendingly instead of discussing options. How can we have a relationship with him if he is always playing the ‘bad cop’ with us when we are operating in good faith? 4) He has strongly implied that Em’s pain is her own doing and if she would only ‘obey’ him, she could be pain free, and fatigue free as well. It is cruel to tell a child who has a condition that causes chronic pain, that she is causing her own pain by laziness and lack of motivation and it is unreasonable to make her believe that ‘pain free’ is a possibility. 5) He has no interest in her other health concerns, which are serious and complicated, and have a direct impact on her pain and overall health. Nor does he seem to have any concern about her emotional well being and how she is dealing with her life being totally derailed by EDS. I have not seen anything close to compassion from him since the first visit with him. I am in contact with another family who, oddly, has had a very similar experience with him, so it makes me think it is not all us.
I feel that we have tried very hard to work with this guy, although we have had serious doubts and issues since the second visit. My daughter deserves a pain doctor who she trusts and has a positive relationship with. At this point, I think her relationship with Dr. G is not salvageable – I don’t think there is anything he could ever do to make her trust him and it is unrealistic to keep on in a ‘failed relationship’.
My husband talked to the local pain doctor, who theoretically said he would take a patient Em’s age. I think we are going to proceed slowly with seeing about him taking on Em’s case. We don’t want to prematurely burn bridges with Dr. G, because pain management is critical and she cannot be without a doc to prescribe her meds. But, we are going to schedule a consultation with the local doc and talk to him about our concerns and see if he can help us how we need to be helped. If he can’t, all bets are off for now and we are stuck with our current doc. So, we will jump through their hoops and stay in their good graces until we have another situation lined up.
I don’t love the idea of switching doctors, but Em is so hurt and angry by the treatment she has received by Dr. G that I think we have to do something. In a few years, she is going to be in charge of her health and medical team, and this is a really important lesson for her to learn – when is a doctor worth a little effort and when is he hopeless. When to stay and when to go. I think it is time to try to go, for all of our sakes.