Patient Manifesto / Rules of Engagement

Due to popular demand on disability twitter, I’m sharing what I’m calling my patient manifesto / “rules of engagement” document. This is the less snarky version. The first version was written as more of a rant after yet another gaslight-y/dismissive doctor’s appointment. This is the version that I’ve actually faxed ahead to doctor’s offices before my first appointment. It’s been mostly well received so far if they’ve actually read it.

A lot of this is personal to me though I’ve hopefully removed very specific/identifiable info. Note that this is still a work in progress. I’d love to collaborate with fellow patients on a common handout we can give to doctors either as individuals or through some kind of advocacy project. Or else a customizable template. Drop me a line if you’d like to collab.

Here’s the manifesto in its somewhat toned down glory. Enjoy!

Hi new medical team team member!

It’s nice to meet you. I’d like to introduce myself and provide some info on how to work with me effectively. Apologies for the long list.

The short version is I’m a science nerd, please do not treat me as hypochondriac/having health anxiety & please do not attribute symptoms to psychogenic causes without evidence. Also I’m a medical zebra when it comes to medication responses.

Long version: 

  1. I’m a trained scientist & researcher. I do read scientific literature about my health. It may be outside my field but I do have the skills to evaluate quality of experiment design & statistical analysis. If I’m bringing up journal articles etc to you, it’s because I’m a science nerd who believes in democratization of information, not a hypochondriac. Please take my concerns seriously.
  2. I have a physician parent. So anytime I’m coming in with an issue, its already had at least one layer of vetting.
  3. I’m an equal partner in my care so I like working together on problem solving & appreciate that the information flow is not one sided.
  4. Unfortunately for me, I have a psychiatric diagnosis on my chart. This almost always leads to my symptoms getting attributed to anxiety or other psychiatric issues. In the past, this has led to significant delays in accurate diagnosis & treatment or else gotten bad enough fast enough to require an ER visit. There’s unfortunately lots of data showing patients with psychiatric issues experiencing significant health disparities due to systemic bias. I encourage new physicians working with me to try to stay as objective as possible when considering my symptoms.
  5. That said, sometimes there really are no answers or there’s not enough data to have the answers or the science is really in its infancy etc. I’ve had the unfortunate experience of being told “x benign symptom you have we (as in the scientific community) don’t know what causes it but in your case it’s probably anxiety”. This not only bothers me as a patient but as a scientist. If the cause of something is not know, I’m fine with hearing that but not with the added speculation that its probably anxiety.
  6. Related to that, if there’s a hypothesis explaining my symptoms that you’d like to explore, thats fine. I do like to know when something is a hypothesis rather than a diagnosis with solid evidence behind it. Also untestable hypotheses linked to a history of hysteria diagnoses don’t jive well with me (yes I’ve been reading PubMed papers linking “functional” disorders to hysteria)
  7. On the topic of anxiety, I have enough insight into my feelings to tell you when I have anxiety. In fact I’ve taken the “it’s probably psychosomatic/anxiety” stuff seriously from previous healthcare providers and ended up very sick like that time I got in a carpool car and had trouble breathing within the first couple minutes and told myself it’s psychosomatic and sat through an hour long car ride. I ended up getting viral bronchitis due to an allergic reaction and had to take an inhaler for weeks to get back to “normal”. Still couldn’t take a deep breath months later without coughing.
  8. Soapbox time: medicine needs a serious case of systems perspectives. Please think through interfaces and interactions w other systems when you provide advice about interventions.
  9. If you’re gonna give me meds, realize that for a long list of meds, I fall in the 3-sigma tail of side effects and not the 1-sigma middle. If you treat me like the 1-sigma middle, chances are things will go wrong and in some cases very very wrong. So if I’m asking you detailed questions about side effects, it’s not some irrational anxiety – it’s based on prior data about my body. I have had pharmacogenomic testing done & do have some documented issues re drug metabolism. Please do not be like the ER doctor who was going to send me home without even a basic exam after I had to be carried into ER by family with tremors all over my body and unable to stand. Except that by the time 5 hrs later when I got to see someone, I could stand up again. Anyway had tiger mama doc not insisted I be actually examined, I would’ve been sent home very sick. Because she insisted, ER doc actually gave me a basic Neuro exam which I failed spectacularly in about 50 milliseconds and then they had to call down neurology and then when they didn’t know what was happening, I told them what the pharmacist had told me days earlier that I was likely having an overdose reaction to a starting dose of psych meds (btw I will always trust pharmacists over you re side effects coz had I listened to him instead of my outpatient psychiatrist who dismissed my symptoms, I wouldn’t have ended up in ER). Some time spent searching the literature later I was told the pharmacist was right. Moral of the story is: improbable things happen to me on a regular basis when it comes to meds. Trust that I’m accurately reporting symptoms and not “just anxious about side effects”. You might have to go the extra mile and do some literature searches for rare side effects. If I come to you, I have already spoken to mom, the pharmacist, possibly the drug manufacturer and done a search on PubMed as well as publicly available pharmacy databases. And yes I’m a trained researcher, I’m good at evaluating sources of data. I can find the citation for you but there’s also a study showing the time from patients reporting after market side effects on online patient forums to it ending up on the drug label is around 7 to 9 years. Patient forums are also a potentially good source of info though one has to be more careful sifting the data.
  10. I realize your hands are tied too in terms of help you can offer within the constraints of our sucky medical system. That’s ok. You can say that to me. But once again, please do not invalidate my symptoms etc by attributing things to health anxiety etc. It is ok to say: I can’t or don’t know how to help you. It is not ok to say: you’re worrying too much about this. Worrying about your health when you have significant life impacts due to health is a perfectly rational and reasonable response. I do not ascribe to pathologizing rational responses to bad situations. I am not the problem. The sucky situation is the problem.
  11. Any treatment that requires me to “believe it will work to work” will not work on me. Either it’s objectively useful or it’s not. [Yes a doctor recently did tell me I need to believe a treatment will work to work a few months ago]
  12. I’m well aware of the statistics around poor health outcomes for ppl with psychiatric symptoms and ppl who are WOC because of systemic bias. I will not be another statistic. I’m my own advocate and I’m assertive which some types of therapy tells you to be. But fails to take into account that coming from women and especially WOC social conditioning = seeing us as aggressive and rude. Please do not do this.
  13. Please do not give generic advice on “healthy habits”. This is not helpful. If its something I can easily find by googling or something a primary care physician (my mom) would know, consider that I’m already aware of it but I may not have implemented it due to other health or social constraints. Working with me on a specific plan that works within my constraints is always guaranteed to produce better outcomes.