Health Care

The Right Kind of Patient

I’ve recently have found myself struggling with how I present myself as a patient. Are there right and wrong behaviors for the chronically ill? Do doctors treat patients differently based on how they interact in office visits?

I’ve had a Fibromyalgia diagnosis for 11 years, and have been living with chronic migraine for at least that long. So I have been a patient for a long time and have met with maybe a dozen doctors. All of who I have tried to explain just how much these conditions affect me. Coming to a realization that maybe I’m going about it the wrong way was a little startling.

Until recently I wasn’t even aware that I was portraying myself in a certain way in front of my care providers. As I have become familiar with the personality that I put on in the doctor’s office, I’ve asked myself “do my doctor’s believe that I’m in pain?” “do they really want to help me?” and most interestingly “is this the most effective way to portray myself to get what I want and need?”

I am a people pleaser, this may not surprise you. When I attend a doctor’s appointment I am respectful and cheerful. I fill out the forms that no one ever looks at. I say hello to familiar faces, and participate in small talk as the nurse takes my weight, blood pressure, and temperature. When it is time to wait, I smile politely and work on my crochet or read a book.

I never complain about how long the wait is and I try to keep my actual health “complaints” to a minimum. I share the facts about my symptoms, what may have changed in my life, and how I am managing them. My doctors never hear how impacted my life has become from pain and fatigue or how I really wish things were different. There was a time when I wanted to share these things, but I quickly learned that even the best of  my doctors were not receptive.

Above all I smile. I can’t help it. When I engage in conversations with people I smile, I can’t turn it off. Even when I don’t feel like smiling.

I don’t cry, I try not to catastrophize my pain (they teach that work in therapy, it’s thinking about the worst that could happen and building something up to be bigger than it is), and I always am agreeable about suggested treatment.

Lately, I ALWAYS leave the doctor’s office feeling like I didn’t even come close to explaining the levels of pain and fatigue I experience. And because I failed to do this, my doctor just doesn’t understand my experience so can’t possibly treat my pain. Even when I say over and over again, “I’m in pain all the time.”

I am already aware that there is a gender bias in health care. Men’s health concerns are treated differently than women’s, especially when it comes to pain. If you really want to dig deep about this topic I highly recommend Doing Harm by Maya Dusenberry. Maybe even before I was actually aware of the bias, I adjusted my behavior accordingly because of it.

As a kid I was often in pain. I would express this pain to my mom or dad, my coaches, camp nurses, or doctor. And then nothing would happen. I’d get a bag of ice, or I’d take some ibuprofen (starting at 8 years old, my stomach has become so sensitive that I can no longer take it at all). The pain did not go away. Eventually I just learned not to mention it, to ignore it, until I couldn’t anymore.

I now see all of this behavior is my attempt to be a good patient, the “right” kind of patient. I truly believed that if I was pleasant, and patient, and stoic in the face of my pain that a doctor would find the right treatment for me. But now I’ve come to the conclusion that maybe they don’t even understand the severity of my experience.

The hardest part of where this leaves me is that the other side of this persona that I put on in the doctor’s office would be to be angry. And I can get very angry. And I guess I just don’t want to go there.

Anger is so consuming, it affects every aspect of your life  I’ve learned to handle the anger I have about living a life with chronic illness, and things not working out how I imagined them.

But what do I do with my anger in this case, am I angry at myself or angry at my doctors?

So I just feel lost now. Over the years I’ve gathered a collection of treatments that make things bearable the majority of the time. Do I continue to be the kind of patient that is agreeable and friendly, who doesn’t complain, or get emotional? Being that kind of patient gets me some of what I need, I have a good primary care provider who continues to prescribe the medications that I have found most helpful, and I have a headache specialist who, if not actively treating my pain, is continuing to see me and trying new migraine treatments as they become available.

Do I just accept that this is as good as it gets? I will continue to search out answers as I strive to create the best life for myself. But sometimes I just wish things were all slightly easier.

3 Comments

  • Julie

    Not sure you are seeking advice here, but I would like to offer what has worked for me. I present them with my best day vs. my worst day summed up in about two paragraphs. I repeat the most important take-away I want them to have at least three times. I focus on one issue per visit (in a sound bite of sorts) and make sure I get a satisfactory answer on that issue before I smile, shake hands, and agree the visit is over. Sometimes, the satisfactory answer has been, “I don’t know why this is happening, but I care.” And that’s fine at this point. Or, “I don’t know, but I can send you to Dr. X who might.” I’m not happy about that answer, but I’ll take it. From working in the healthcare field and being a chronically ill patient for more than ten years, this is what I’ve found works for me. I hope this helps. It is so frustrating to feel helpless and unheard.

  • Alicia

    I am the *exact* type of patient as you describe you are! In addition to what you’ve mentioned, at one point I would also would take all my extremely detailed notes to each and every appointment. I journaled and tracked any and everything all the doctors recommended. Unfortunately, it was all for nothing (absolutely no patterns found), and so now I basically track nothing as I am unwilling to waste more time.

    I have many examples of why being our type of patient doesn’t seem to be as effective as we’d like, but one in particular comes to mind: I was describing a pain level to a doctor. I prefaced it by reminding that doctor that MY pain scale is different than the average Joe. What would land someone else in the hospital in agony has become just another opportunity for me to “suck it up” and continue my normal daily routines. If I did not do this, I would never have any sort of normal life. So anyway, this particular day I tried to describe in words my pain level, in relation to me and everyone else and the pain scale hanging on the doctor’s wall. It was extreme. My doctor asked me if I went to the hospital for the pain, if it was as bad as I was describing. I replied that I had not (because, once again, if I went to the hospital every time that a doctor would think I should go, I would be living there and flat broke from medical bills, AND there is usually no way they are able to help anyway). That was the end of the conversation as far as my doctor was concerned. I could tell she immediately thought I was exaggerating my pain level, just because I didn’t seek treatment. There was no convincing her it’s just a matter of my stoic personality, and the fact that I’ve learned to tolerate these things.

    I appreciate you sharing your experiences. I wish I had something to make both of our experiences better, but for now it seems like we’ve both found methods that work at least in part for us. Best wishes!

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