What’s my relationship like with my doctor? Well, it’s complicated. Perhaps I shouldn’t be the person addressing this topic. I’m tainted. Even my spouse gave me a disconcerting look when I told her the topic. And for good reason. After all, if it wasn’t for her and if I had only listened to my doctor, I wouldn’t be alive.
My primary care doctor ignored and then downplayed a lab report indicating that I had agranulocytosis (a life-threatening drop in white blood cells) from one of my medications. There was neglect, ignorance, and a general lack of understanding about the disease and effective treatments on their part.
My wife called my rheumatologist. This doctor saved me. They asked for a copy of the lab report and then immediately drove across town to check me into a reverse isolation ward where they couldn’t find any trace of white blood cells in my bone marrow. The hematologist later said the odds against me recovering were astronomical.
A New Perspective
This near-death experience changed my relationships with who and what is important to me. I feel being good at my job is important. Being alive and healthy to raise my children is paramount. I will never forget how my spouse acted as my shield and advocate while holding her work and our home together.
It also changed my relationship with my health care providers. I can never again fully entrust one doctor with my health.
My experience helped me understand that my relationship with my doctor is intertwined with my relationship to my condition. At times my ankylosing spondylitis (AS) feels loosely connected to me. Sometimes AS feels potentially serious but still temporary. AS can also feel just as incorporated part of my body as my skin. Basically, I ask myself if I am renting, leasing, or owning AS?
At first it was like I was renting a car or an apartment. I just wanted things to work. I wasn’t invested. Any repair was fine as long as I was functioning and safe. I was detached from the process and barely engaged with the doctor and their decision-making process. As long as they seemed competent and what they recommended worked, I was fine with it. AS was just a wonky obstacle to fix. I would take their pill and move on with my life.
But then problems began to reoccur or new issues came up. It became clear that there’s no quick fix when it comes to treating AS. This disease is systemic. So I began to think longer term. Like a lease, clearly I was going to be here with AS for a while. Someone needed to think about adverse events and long-term consequences.
When I started having gastrointestinal issues, I realized I needed to pay closer attention to the AS meds. I needed to make sure my health care was coordinated and that there was a longer-term plan. Switching mechanics (or health care providers) in the middle of a repair is generally not a good idea, so it’s best to do your homework and find a doctor that you can work with. In a lease, I want competency, accountability, and a broader outlook. Still though, as long as I went to a dealership for service, I didn’t really care who the mechanic was.
At some point, my perspective changed to owning AS. I believe there will be a cure and a way to prevent AS. Until then, for me, AS is a long-term relationship. That means I must become an expert on my body and my lifelong goals. Some treatments are effective and others aren’t safe for me.
Owning AS also means that I need to make and own the decisions. Nothing happens to my body that I’m not comfortable with. My doctor is an expert on the human body. The doctor is also a gatekeeper to, and advocate for, health care options. That’s a relationship I want to genuinely nurture. I want to understand their strengths and weaknesses. I believe it’s helpful if they personally know me. My doctor has seen me when I’m doing well, and I expect they will do what they can to return me to health when I’m not. I prefer to have the same primary care doctor as my other family members.
I feel finding the right doctor is a bit like matchmaking. Some people want the most published and recognized expert, while others want their physician to be open to complementary treatments and approaches. Too many of us don’t have access to a choice that we’re comfortable with.
Luckily, rather than trying to find one physician that is all things, I have more than one doctor on my AS team. I have a rheumatologist, a gastroenterologist, an ophthalmologist, and a doctor that I would say specializes in listening to me and helping me manage a lifelong disease through a variety of approaches, including diet. I also have a host of other "consultants" on my team. These are reliable sources of information such as the Spondylitis Association of America, my spondylitis support group, yoga teacher, psychologist, clergy, friends, and others. This is the team I assembled well over 10 years ago -- after I decided to own my AS and the treatment I receive.
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