MCAS and our current medical paradigm clash. It can’t be treated ‘system by system’. I need to see SO many different specialists, and I have to be the go-between, referee, and decision maker. As I’m sure you can guess, I’ve had a few bumps with physicians. People with MCAS are notorious for ‘burning through’ specialists. Our symptoms are paradoxical, and there’s a piece of the puzzle in every system in the body, because there are mast cells in every organ in the body. MCAS highlights silo medicine and universal health advice at their worst.
Vancouver is a small town in many ways. Many physicians here ask their colleagues, but it’s a insulated group (simple geography- The Rockies are in the way), so bad information keeps cropping back up. Many physicians trained in the ‘old model’ of medicine can’t wrap their heads around MCAS. Instead of whinging and complaining (frankly, I get sick of hearing myself…), I’m trying to remember to pull some ideas from systems change that I’ve picked up along the way. The corporate training name for it is ‘Positive inquiry’ (or some other equally useless term). It’s based on sharing narratives of what went WELL in a particular area. While we have to analyze what went wrong, and reduce that, true systems change comes when people are working towards something, not running from something else. If people have nowhere to run, they’ll go right back to where they were comfortable, and nothing moves forward. And frankly, it’s much better on the psyche to be told ‘Please do more of this’ than ‘This is an issue, that is a problem’, etc. So, instead of whinging about all of the not-so-great medical appointments, I’m going to highlight when it goes right.
I met a new physician last week, a cardiologist. THAT is supposed to be how it goes. I also saw an on call doctor this week, who was fantastic. What came together to make the interactions so positive? Nothing’s that simple… but here are some of the things that the doctor did to make it go well. I am also learning what I can do from my side of the equation, but I’ll save that for another day.
Patient Centered Care
We hear this phrase all the time, and yet, somehow, patients end up having to do backflips to get doctors to listen to us, and we are often dismissed. It’s vital that specialists recognize that their best source of information is the patient themselves. Especially with MCAS. This is a disorder where one patient has severe reactions to foods, another to body states, another to airborne particles, etc etc. One has liver failure, the next has neurological issues, one is hypotensive, one is hyper… Meds work well for this patient, but they’ll do the next one in. This is more than just lip service, Patient Centered Care is essential to successfully treating MCAS.
Read the file.
About a year ago, I went to see a psychiatrist. It was traumatic (Ach, the irony that one of my top five most traumatic life events was seeing a shrink…). One of the most difficult things was that he refused to tell me what info he had about me, what parts he knew, etc. My story is LONG and complicated. If I start at the beginning, I’m going to be there for weeks. He wouldn’t even tell me if he knew what MCAS was, if he understood anything about it or my situation. I felt utterly lost- (which may well have been intentional, it certainly put me off balance). His analysis was completely crazy, he took what I said, and assumed that he had the whole picture. It was a colossal waste of our time, and it had a strong negative effect on me and my care.
It took me a long time to realize that specialists didn’t always read the information that was sent to them. I wouldn’t have dreamed of going to see a student without looking at their referral (that’s why I had to have the referral- not just for informed consent, it was to tell me what I was supposed to do when I saw the student). If there was a kid I’d seen before who I couldn’t remember, I looked it up before I went to see them. In general, I’ve noticed that doctors who look things up (and go beyond asking one of their buddies), are more open to learning from their patient. I’ve lived in this body for 44 years. My body has changed over time, it can change from day to day- information from me is essential. There are some illnesses that can be diagnosed and treated by numbers (perhaps not treated well, but at least treated). MCAS isn’t one of them. A physician must have good listening and quick analytical skills to deal with MCAS in real time. And frankly, nothing gets under my skin more than a doctor who hjas never heard of MCAS telling me I don’t have it. If they’d cracked the file, even the tiniest bit, they would have known to look it up before I walked in the door.
Information Gatekeeper or Detective??
It seems to bear that there are two kinds’ of specialists: those that think they are the ‘holders of knowledge’, and those who think they are ‘interpreters of knowledge’. (GP’s- there’s a lot more variability). Part of it is simply age, there are physicians who got their license 50 years ago. Things have changed a bit. Specialists who are okay with their patient knowing more than them are heads above the rest. Docs don’t have to take me at my word, in fact, they should verify what I say. But if I’m your first patient with MCAS, you’d better not recommend a THING until you have looked it up. Accepting the possibility that I might know something they don’t, is an indicator that their ego is in check. Docs who define themselves by their knowledge can’t do that.
Technology is your friend
Any physician who is surprised or annoyed when a patient says that they looked it up online needs to retire. I look information up 10 times a day, it’s how I DO things….. “I wonder what the etiology of this word is. What’s the weather look like? When is March Break? What brand of crackers should I try next? I wonder what Maria is up to… (Harvey, Irma, Jose…. ).’ Etcetera. “Knowledge based” physicians see the internet a professional threat, rather than a tool. Health information online is usually very simple, or exceptionally complex. The first ‘tier’ information is repetitive, filtered, and general, and tells you that you need to see your doctor for a hangnail. The other info easily accessed is medical journals. As soon as you hit that point, then there is too much information, not too little. And the background knowledge requirements get bigger, too. I don’t need more information. I need help filtering the information, applying it to my unique circumstance. Technology can’t do that, only experience. Dismissing MCAS as an “internet disease’, however, is beyond ridiculous, especially if you don’t have any better ideas… In the right hands, the internet is fantastic for medicine.
Continued in Part Two