Awake, as I often am at this time of night, sick… nausea, pain. Lots of angry comments, as expected. Why did I put that out there? I’ve already pissed off scientists, doctors and now quite a few patients. Why would I want to do that? Am I trying to disidentify? I feel pretty identified as I write this. Why did I write something so critical? Because it’s my truth? That’s pretty presumptuous. Why should anyone care? The important part of the post is the medicine, which received very little comment. Interestingly, there were positive comments back channel from doctors about the same paragraph that made patients angry.
I’m not a writer. I’ve never written before. The blog was Ali’s idea. I felt that I was finally emerging from the medical darkness and that sharing my ideas as they were unfolding might have value. Blogging is interactive, so perfect for bidirectional running commentary. The anonymity of the internet makes it a bit tough for the blogger if you have controversial views of a complex issue, but so far it’s been worth it. I’m OK with the anger (within limits). I’ve written about anger here quite a bit. I’m angry too. And I have no interest in speaking with my “inside voice”, nor am I encouraging anyone else to do so. What I am trying to do is frame the discussion in a way that evokes compassion in people not living with the disease.
If you don’t like the comparison to a level of suffering outside of the industrialized world, then let’s talk about suffering in the world of cutting edge medicine. As a hospital based physician for many years, I learned that the myriad ways in which the human body can become deranged makes for a veritable chamber of horrors. ME/CFS patients don’t have any corner on suffering, though it’s a contender when the disease gets really severe. I saw unbelievable things as an ER doctor. There are lots and lots of horrible ways to get sick. What is different about our experience is the incredible degree of disbelief and misunderstanding we’ve had to endure. As a patient group, we’ve been stripped of our dignity. We’re not unique that way either, but there are an awful lot of us and it’s gone on for a really long time.
Where do we go from here? Medically it’s not that tough. The doctors need to treat the patients with very limited information, as usual. Their awareness needs to be raised so that they know how to approach the illness, but if it’s put on their radar, they can handle it. It seems clear from the animal retrovirology literature that the scientists can handle it too, if they stay engaged. That’s the big if right now. We need them to see the big picture, that it’s bigger than XMRV. Big enough for careers to be made and prizes claimed. We need to find a way to inspire the compassion that we deserve. We’ve all been wronged.
Personally, I find it helpful to remember that many people suffer more than I do. My illness has been my greatest teacher. I can’t control what happens, but my response to it is all mine. There are still amazing moments. I’ve had some wonderful moments reading comments on this blog – moments of connection. Now, from some of the comments, I guess I must be getting close to something that’s festering. I questioned a mindset that’s ineffective. What now?