Ordinarily we limit guest posts to current members of SPM, but this is an extraordinary case. Duncan Cross’s post illustrates so many aspects of how empowered, engaged, activated patients view their lives, and how important it is to have an effective partnerships with their medical professionals. This is exemplary – except for the physician’s rejection of the patient’s perspectives.
Duncan Cross writes “the best-written patient blog on the web”, focusing on the common experience of illness, shared by all sick people no matter how different their diagnoses. He created ‘Patients for A Moment‘, the first blog roundup for patients by patients, and contributed to two books on chronic illness. His novel, League of Mortals, is now available. This blog post first appeared on Duncan’s blog and was reproduced here with permission.
This is the type of letter that e-patients should be writing their doctors for both good and bad performance. Thanks for sharing, Duncan!
My gastro retired, and the practice suggested a new one. She was mean. I wrote her this letter, put a stamp on it, and mailed it:
I want to apologize for my demeanor at our appointment last Thursday. I have some anxiety issues with respect to physicians, and they were in full force that day. I probably seemed defensive and upset, and I know that is not conducive to a good patient-physician relationship.
That said, I think it best that I find another provider. Part of my reaction was to how one-sided our conversation felt. I have had Crohnʼs disease for 20 years, and my case has been unusual and difficult in many respects. This has forced me to learn about my illness, stay up on trends in research, and pay close attention to my body and its signals. You would have to search hard to find a patient more knowledgeable, more capable, and more invested in their care. None of that seemed to matter to you at all. You were treating a disease, not a person.
I have been sick long enough to remember when physicians could do that freely – but those days are over. The prejudice that allowed physicians to lord over their patients is no longer excusable. So your attitude was a shock – like finding segregated lunch counters – and I did not know how to respond. I am sure you feel proud of the hard work that got you into that room, but keep in mind that what you endured is not a fraction of what I had to go through to get there. That you had trouble recognizing that fact was baffling and infuriating.
From my deep experience with this illness, let me say that when a patient complains of ʻpainʼ, you must take it seriously. The idea that pain is only real when the patient has obvious bowel inflammation is bad medicine. Physicians cause tremendous harm to patients by not taking pain seriously: nothing is more depressing or discouraging, or more alienating. One source of my anxiety is that a gastroenterologist told me my pain was irrelevant, during the worst flare of my life; my despair drove me into suicidal depression. You reminded me how much I wanted to kill myself back then.
My disease has taken a great deal from me: my career, my vitality, my sanity, my self-esteem, my hope. But by far the worst aspect of this disease is that it leaves me beholden to physicians who donʼt actually give a shit about me. It took a lot of work and a lot of pain, but I finally got to a point where I donʼt need that brand of help. So while Iʼm disappointed that you wonʼt help me get better, I am very much relieved that I donʼt have to let you make my life any worse. I worry your other patients are not as lucky as I am.
If you wish to be helpful in your practice, you must learn to regard those patients as partners and equals in their care. Until you do, you will never be able to really help them – and you may well hurt them.
I never heard back.