Hi there, friendly physicians.
I’m the sort of patient you intensely dislike. I have a medical history as long as “War & Peace,” several co-morbid chronic conditions and many allergies. I ask a lot of questions and don’t automatically agree with your suggestions. I know a lot about my illnesses, the medications I take, and biology and physiology in general. My conditions aren’t cut and dry; you can’t send me away with a 10-day prescription and declare me cured.
Do I have a more complex case than most of your other patients? Yes. Am I more difficult to handle than the cheerful people who come in once a year, nod, don’t ask any questions and go on their merry way? Absolutely. Do you wish I’d go away? Maybe. And that’s fine.
There’s one problem with that: my illnesses aren’t going away. If I want to stay alive and have the best quality of life as possible, I need assistance from the medical profession. Believe me, if I didn’t require your help, I wouldn’t be in your office.
At the end of the day, we’ve really got the same goals: you want to help your patients, and I want to be helped. The more stabilized I am, the less you will see me, and the easier your job – and my life – will be.
The thing is, we need to meet each other halfway.
I don’t anticipate we’re always going to be on the same page. I’m not expecting you to smile, nod and acquiesce to every suggestion I make. I don’t expect to walk into your office and dictate the course of treatment against your wishes. I know you don’t exist to be a prescription ATM. I wouldn’t bother coming in if I planned to disagree with everything you said. There’s just no point in that. I don’t expect magic cures from you, either – I’m fully aware at this point in time, a lot of my illnesses aren’t fixable. When I walk into your office I am committed to being polite and respectful to you.
In return, I don’t ask for much, but I ask for everything: I expect to be treated like a human being.
I come into my appointment with certain expectations.
I expect you to respect me as a person first and a patient second, and to treat me with courtesy, not contempt.
I expect you to treat me the way you would want your parents, siblings or children to be treated by a doctor.
I expect you to listen to me when I explain my symptoms, and to realize those hoof beats really are made by zebras sometimes. The fact that a patient’s complaints aren’t easy to isolate or diagnose doesn’t mean they’re not real. We can’t see dark matter and certain subatomic particles, either. It doesn’t mean they’re not affecting our universe every single nanosecond of every single day.
I expect you to understand when a patient says they’ve been “doing research” it doesn’t always mean they’ve been trolling Wikipedia; they might actually be reading and fully comprehending professional journals and peer-reviewed research, just like you. You have to be an expert on many conditions to do your job, and I have to be an expert on myself to survive. If it bothers you, look at it this way: the more I know, the less you have to explain and the sooner I get the hell out of your office.
I expect you to understand I have a say in my treatment, because it’s happening to me. I know that’s frustrating because you’d probably much rather I automatically consent to everything you want, but it is what it is. If I decide the side effects of a particular medication or procedure are deal breakers, I need you to respect that. What seems like a “minor” side effect to you might mean the world to me, and my body is the one that has to contend with it. In such cases, the benefits do not outweigh the risks for me. Considering I’ve lost so much of my health, I’d really like to preserve what I have left, and I don’t think replacing one problem with another is a good tradeoff, particularly if we’re not even looking at a cure. What if that means we can’t treat my condition? In that case, let’s work on palliative care as much as possible.
If you order testing, I expect full disclosure on what it is and what you hope to learn from the procedures. I want to know what you’re looking at and looking for, and I deserve to know what’s going to happen to my own body.
I expect you to comply with state and federal laws, including my right of access to my medical records.
In short, I expect you to keep me fully informed and for us to cooperate to develop a feasible, informed plan for my health. This isn’t as hard as it seems. It requires both of us to listen, compromise, and figure out what will be best for me. This is about my life – not your ego.
If you can’t do these things, we won’t be working together. It’s that simple. I won’t stand for it. I won’t soldier on in silence. I won’t tell myself, “Well, he’s horrible as a person, but…” I won’t feel guilty about asking for a referral to a different doctor. I am paying to see you (or my insurance is); you’re not doing me a favor by gracing me with your presence for 10 minutes. If you can’t treat me with respect and recognize I am a partner in my own health, I’m firing you.
Is it harsh? Yep. I don’t care. To be honest, doc, the gloves are off because I am sick to the teeth of encountering your colleagues who don’t do their jobs, treat their patients with contempt, don’t listen and don’t care. I’m tired of the ones who don’t bother educating themselves on the conditions they’re supposedly treating. I’m exhausted by the ones who ignore decades of peer-reviewed research and pretend legitimate diseases don’t exist.
I know it’s not all of you, or even most of you. You may have gone into medicine for the same reasons I once considered it: to make a difference, help people get well, and explore complex scientific principles. I doubt when you spent almost a decade in medical school and went six or seven figures into debt, you were doing so with the intention of being a jerk to your patients. I know even doctors who truly want to help have a lot of mitigating factors I don’t know about that limit what they can do.
Maybe you’re that rare doctor who considers difficult cases to be a welcome challenge. Maybe you’re one who stays in the rare disease clinic or works in a remote area even though you could easily get a more lucrative and comfortable position. You might be that doctor who hands 10 samples to her patients because she knows they can’t afford their prescription copays but really need the meds. You might be the one who negotiates payment plans, even if that hurts the bottom line, to help uninsured patients. Perhaps you’re the one who is still returning calls and emails from patients at 11 at night. You might do your very best to ensure every patient who walks into your office is treated appropriately and with respect. I get it. A lot of you are absolute superheroes. And I do know some of you personally because you’re part of my treatment team. I appreciate what you do more than I could ever say.
You know those aren’t the physicians to whom this letter is addressed.
I’m sure you get truly rude or abusive patients sometimes, too. I can’t do anything about that, and I’m not them. I’m a person, not a set of clinical guidelines. Please keep that in mind when you’re tempted to judge me on my age, size, chronic illness, gender, income level, or the fact that I want you to talk with me, not at me.
I don’t ask for much, but I ask for everything: I expect to be treated like a human being. It’s as simple as that. This is about my life – not your ego.
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