Response to “Letter to Patients with Chronic Illness”

There is a blog post that is making the rounds again. It’s actually a great that I find myself nodding in agreement with as I scroll though it. But, there are flaws when the sentiments are applied to my medical care, which I am guessing is much like many other’s experiences. You see, the blogger has opted to go into private practice, as in no insurance accepted. He makes his decisions without codes and policies hanging over his head. I respect that, but it just isn’t a reality for most people. So, here we have an excellent post that when shown to a “regular” doctor, we get laughed at.

Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

Ok. I get that. But having been beaten down by so many doctors I’d say I’m a bit jaded. I see others who do come into an office with that automatic “respect” mentioned here. Those people are becoming fewer as Dr. Google tears down the mystique of “doctoring.” I say that doctors should just over themselves and their God complexes and get back to the job of doctoring.

Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.

Respect is earned. Everyone should receive a certain level of respect because that is part of being civil. But, if you want more than that, try earning it. I respect that you went to school and decided to take on this job. I respect that you have more knowledge about certain things than I do. I respect that you have chosen to be a doctor. I want you to respect that I too know many things you do not. I too went to college and while I chose a different vocation, it doesn’t make me “less” than you. I want you to respect that I came to you for help, not to get into a contest of “who knows more.” If you want me to listen to you, try listening to me first before offering more of the same platitudes I’ve heard from others before you.

Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.

Ah, a beautiful sentiment. Please, yell this from the rooftops to anyone that will listen. Doctors change practices, move out-of-state, quit the job, You leave us just when we start to think you have a clue.

Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.

I wholeheartedly agree with the idea of only going to the ER when absolutely necessary. I wish the insurance companies made this possible. Right now, some practices are so booked that the only option a patient has for being seen in the next two weeks is to go to the ER.

But, here’s another side. When I go to the ER, something is so wrong with me that I can’t manage it at home. Trust me when I tell you that I have tried everything I can to avoid an ER visit. By the time I throw in the towel, my body is so far gone that only emergency treatment is going to make a difference. Now, treat me as an emergency. Stop trying to blame everything on my chronic illness and treat what you see. Give me fluids to fix the dehydration. Give me pain medication like you do other patients who are in pain. Stop questioning my “motives” and do what you proclaim to do…solve the emergent problem.

Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.

I avoid doctors. My “experience” has shown me that even if I show up with something “routine” like an infection, my doctor’s will find some way to make me feel like I’m wasting their time because it’s part of being chronically ill. If I don’t come in with a big, complicated problem, I get brushed off so the doctor can move on to the next patient. What you see as allowing things to build up, I see as me coping with the small stuff you wouldn’t have dealt with anyway.

Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.

Another nice sentiment. Driven by the insurance companies we rely on to help pay for the very expensive care required to keep us going, we don’t have that many choices. We are assigned primary care managers that we can only change once a year without penalty. How many years of “suck” are we going to have before we find one less “sucky?”

Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

A reminder for doctors…this is a two-way street. Forgive us for being, in your eyes, too pushy. We’re probably at the end of our ropes trying to cope with not only the demands of our illnesses but also with the lives we want to have. We don’t want to be constantly reminded that we are our own best hope because everyone else has better things to do than work with us.

Chronically ill means life is inherently different and most likely harder than for someone who is relatively healthy. As doctors are generally “healthy,” it stands to reason that while they can empathize with a chronically ill patient, they really do not understand how hard we fight every. single. day. We are plagued by stereotypes placed upon our heads by doctors. Our insurance companies know us by name because we are constantly battling to find the less sucky part of the road. And just when we think we have found “the one” who will listen and learn and try to help us, we discover….

That the reality is doctors have “solvable” problems that allow them to feel successful rather than helping people obtain the best quality of life possible when living with chronic illness.

Here’s the link to the original letter:


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