Dr. Rob is widely published but I just recently came across his blog,
Musings of a Distractible Mind: Thoughts of a moderately strange (yet not harmful) primary care physician. It is wonderful! He’s a compassionate and reflective physician who is willing to put his inner most thoughts out there for us to cherish, disparage, or discuss. A few weeks ago he had a post titled A Letter to Patients With Chronic Disease which had more views, comments and mentions across the world wide web than an of his previous posts. It’s quite long and starts like this:
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
It’s really a post worth reading. And if you are at all like me, you are appreciateve about some of the things he said and bristled at others. I felt a lot like one of the commenters, Sophygurl, who had this to say:
Am I saying that this means I storm around a doctor’s office making unreasonable demands? No. But I also should not have to psychologically arm myself before stepping into that office. Seeing a new doctor, or one who has treated me poorly in the past (and I’m sorry but many of us chronically ill patients do not have a lot of choice of who we can for reasons having to do with locale, insurance, and finances, etc.) puts me at severe unease. The first time seeing a new doctor, I don’t know if I’ll be getting one of the ones who will meet my eyes, tell me the limitations of what they can do, and ask me what direction I want to go in. I very well could end up with one of the ones who yells at me until I cry because I am confused, when confusion is part of my illness.
I appreciate this post more than you know. I honestly do. For many reasons I probably can’t even articulate right now. But it still also leaves me angry.
There were so many responses to the blog post, some of them on the offense, that Dr. Rob wrote a few blog posts in response. One was titled My Side and after an introduction he made six points. To get a sense of his response, I’ve listed two of his six points below:
3. I also run a business – In terms of priorities, I need to pay my staff, pay the rent, and pay my personal bills to even have the chance to take care of patients. I get frustrated when patients insinuate that I value money too much. I get very frustrated by that, actually. People seem more willing to pay for cable TV, cigarettes, or eating out than to pay me for what I do. I earn less than most other medical specialists, yet some people resent my income. The mess of a system we have works against primary care and works against complex patients. If I spend 30 minutes with a complex patients (I do spend 30 minutes with people regularly), I am paid about 50% more than if I see a 5 minute ear infection visit. Doing the math says that my mind is not valued and that I should see more ear infections and less chronic patients. All of this adds to my daily stress.
5. I hate bad doctors – Many of the comments to the letter I wrote were lamentations about doctors who suck. Unfortunately, doctors who take bad care of their patients make my life miserable too. I have to clean up their messes, I have to re-teach their patients on what medicine should look like. I have to wean their patients off of addictive drugs that they didn’t have the guts to deny. I am personally frustrated when I send a person to a specialist and they don’t do anything or upset my patient, and I hate the fact that they almost never communicate with me. It makes my already hard job even harder.
So after you have taken a few minutes to read the original blog post, let us know? How did this make you feel? Many of you are not the person with the chronic illness, your children are. Does that change your reaction?
Thanks for sharing!
Nora
