Having a chronic illness which is a syndrome and presents with several different symptoms and issues can be really daunting at times. With some of the issues that I have acquired over the years there are very little answers, and even fewer treatments. As a patient this can be disheartening, and frustrating but there isn’t much talk about what it’s like as a physician treating the complicated patient. Of course, I don’t know for sure what my physicians are experiencing but I’d like to take a minute to explore it.
Let me take a step back to provide some context to start.
I have Marfan Syndrome, it affects connective tissue and connective tissue is what our bodies are built on so there are several issues that can arise. Cardiac implications are life threatening and so the vast majority of research and knowledge revolves around heart health in Marfan Syndrome – I am grateful for this! However, there are other issues that cause pain and affect quality of life and those issues don’t get as much attention in the medical community. That lack of research and knowledge has directly affected me in the last few years. When I run into a new issue I almost always expect it to be a bit of a mystery to my medical team – whether the mystery lies in the problem or more often the solution – there’s always a mystery.
Earlier this month I had an appointment with an orthopedic spine surgeon for a mandatory second opinion about a surgery that is being considered to help me. The second opinion was not my idea or wish, it was a referral from my primary surgeon so that I could get another opinion about my situation and fully understand the situation and risks with surgery. The problems in my spine are unique enough that there is no literature written on the specifics, there are zero documented solutions and no surgeons in my area that are confident on what to do – if anything. So there has been a lot of speculation, a lot of puzzle piecing, and very little confidence in what to do. Up until the past six months we’ve all just been waiting and watching but unfortunately things have progressed and my quality of life has taken a deep dive. So now the question has been should we try something?
Now that I’ve set the context let me get into what sparked me to write this.
When I talk to people about my situation I hear a lot of exclamations about what’s NOT being done by my medical team. A lot of people jump to the conclusion that not enough is being done and that I’ve been waiting too long for solutions. I generally don’t ever feel that way and that’s probably because I feel very grateful for my medical team and the the medical system I am in. I also feel a lot of empathy towards my medical team – that may seem counterintuitive when you are on the outside looking in.
My first time thinking “man, those poor doctors!” was after my second c-section. The surgery was going smoothly until the moment they cut my fallopian tube for my planned tubal ligation and I felt an intense pain in my chest. When I looked back on that moment a few weeks afterwards I recalled the reactions of the surgeons and of the anesthesiologist. They were so obviously at a loss of what to do because that isn’t a situation you come across often, if ever at all. I could tell they felt awful but nothing could be done aside from trying to control the pain afterwards – that mystery has never been solved and I’m certain they’ll never run into it again. It was so unique and bizarre that it was talked about weeks and months later by my physicians.
The past three years has been appointment after appointment of doctors being unable to offer me valuable solutions. From my perspective I feel incredibly grateful that I’ve managed to gain a team of physicians who don’t say, “sorry, I can’t help you” but say, “I’m sorry I am not sure how to help you but I want to try.” Every appointment I’ve been to has involved a doctor who is very empathetic towards my situation. There has been countless hours of research and discussion amongst colleagues in an attempt to give me at least some quality of life back. Most recently my primary orthopedic surgeon took my case to “grand rounds” where the majority of spinal surgeons gather to discuss difficult cases. We discussed this previously and knew the reaction to his suggestion of a surgery would have push back. That is exactly what happened – not one person said it was a good idea. When I expressed to my surgeon that I expected that he said that it’s easy for specialists to hear a case and dismiss a controversial treatment when they haven’t met the patient. It’s when they meet the patient, hear their story and struggles that they become empathetic and start thinking more creatively about how to solve the problem. That discussion really stuck with me. I’ve felt empathy towards my physicians for years but from what I can tell empathy towards doctors is not a common feeling.
I think that the community of chronically ill patients could benefit from taking a step back and assessing their medical team from a different light. Medical Doctors have been given a pedestal, a perceived authority over our lives but that does not make them any less human. The majority (there’s always the exceptions!) entered into their profession to help people and the majority truly want to make that happen. The majority wish to do no harm while helping us and in the chronically ill world that’s often a very hard thing to navigate. The majority feel awful when a patient walks out of their office without an answer or solution. The majority think about the difficult cases more often than we know. The majority are truly “on your team” hoping and praying to help you live better. The majority deserve the benefit of the doubt that they are doing all they can even when they can’t offer what we desperately want – relief. The majority deserve some empathy from their patients.
By extending empathy and recognizing their humanity we enter into a completely different patient-doctor relationship. It will be a relationship of mutual respect, of teamwork, of better communication and openness to each others suggestions. When we shift from the traditional patriarchal relationship to an equal role relationship we open ourselves up to better care all around.
We all deserve some empathy, and this is my plea to the community of patients to try and extend that to your medical team.