A few weeks ago, and about a year after my rare disease diagnosis, I had an appointment with one of my long-time physicians; someone who isn’t part of my medical team for Complex Regional Pain Syndrome (CRPS, often called by its former name; RSD, for Reflex Sympathetic Dystrophy). He said something that really touched me… and then something that hurt me deeply.
This physician knows me not only as a patient, but also as a potential colleague; because I work in bioethics (sometimes called healthcare ethics, or medical ethics), I’ve worked with several of his colleagues and friends. So there’s a possibility that the two of us might someday work together.
First off, what touched me. He’d been looking into CRPS/RSD on his own – ever since I’d told him of my diagnosis a few months earlier. He’d wanted to find out whether there was anything that he could do to help, and whether any of his specialist colleagues could provide some insight or assistance into this rare disease – beyond what I’d been able to find in the medical journals to which I have access. I was touched that he’d go out of his way to do that for me. No less so because the only replies he’d received were the equivalent of “Wish her luck!”
What he said next, though, is what hurt me; but it wasn’t anything he’d done. He mentioned something in a kind of off-the-cuff manner, sure that I’d already thought of it. But I’d been so focused on trying to stop the spread of the disease, and then on trying to deal with its consequences, that I hadn’t yet looked back at the past year; at everything that had happened since the injury that had triggered CRPS.
Yet once he’d said it, I was stunned that it hadn’t occurred to me. And then I couldn’t get the thought out of my mind. What was it that he said, that affected me so deeply?
That it was too bad that – during the almost 3 months in which the specialist physician was ignoring my (as yet undiagnosed) rare disease symptoms and my concerns that something was wrong – the disease continued to spread and to worsen. (He didn’t use the word ‘ignore’; that’s my word for it.) That if the disease had been caught when I first reported the symptoms, my disease condition almost certainly wouldn’t have been as bad as it is.
And then he asked whether I’d lodged a complaint with that hospital. At that point, my long-time physician realized that he’d given me a bit of a shock; that I hadn’t thought of the fact that this delay – while I was reporting symptoms and showing signs that something wasn’t going properly post-fracture – had likely worsened my prognosis.
That the delay in diagnosis likely translated into greater impairment of my hand and arm… I’d started to cry without even realizing it.
There are perhaps very few times when it’s appropriate for a male physician to hug a female patient, in a closed examination room; I’m very glad he felt that this was one of those moments.
He just sat, with his arm around my shoulders, while I cried for a few minutes… Once I’d composed myself, I asked him why he’d asked me whether I’d filed a complaint. His view is that complaints are a good way for hospitals – for healthcare systems – to learn, and to prevent similar issues. So if I submitted a complaint, then I might spare another patient the same negative experiences that I’d had.
He assured me that my current – or future – healthcare wouldn’t suffer if I lodged a complaint, and that it would be handled professionally; as an opportunity for the hospital to possibly improve its practices and/or procedures. I understood what he was saying, at the level of my bioethics background and training, but…
I was still completely stunned – devastated – by the idea that my disease had been allowed to progress, to spread, and to worsen, because the specialist physician assigned to my follow-up care by the hospital had ignored its signs and symptoms for so long. Because he had ignored me, as a patient. It took me almost 2 months to get past the idea that the – preventable – delay in diagnosis and treatment may have condemned me to a life of excruciating pain and the loss of some use of my right (dominant) hand and arm.
This still upsets me so much that it’s difficult to talk about. I’m hoping that writing about it here might help someone else feel less alone as they struggle with a rare disease, with trying to have their symptoms recognized – and acted upon – by a physician they trust.
And there lies the heart of the issue, for me – at both the bioethics and patient levels. I’d put my trust in that specialist physician, and now felt that he’d betrayed my trust. It was now occurring to me that my disease wasn’t simply a case of bad luck, but also of a case of insufficient – or perhaps bad – medical care. And that “care” may not be the appropriate word in this case…
That if the hospital had allowed me to change physicians, when I’d requested this, then another physician would likely have listened to my symptoms & paid attention to the signs of the disease (when I finally did get a second opinion, at the same hospital, another physician diagnosed CRPS within less than a minute).
And an earlier diagnosis would have meant earlier treatment, less spread of the disease, and less severe (possibly permanent) repercussions. I was left with feelings of betrayal, of the healthcare system that I respect and trust; of a healthcare system that’s meant to put patients first. Not to ignore them, not to ignore signs, symptoms, and diseases… So now I’m looking into that patient complaint process.