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Letter to my Rheumatologist

  • By Marcia Parker

    I switched doctors about five months ago. I felt really hopeful about this new doctor who was younger and well liked by his patients. He’s easy to talk to and takes lots of labs but after my last appointment I felt distraught. I’m beginning to think he doesn’t really hear me or know what to do with me. Over the weekend I became even more disheartened crying a lot about my situation. I decided to write a letter to my doctor. My question is would it be appropriate to send it or should I just use it as a therapeutic tool. The following is what I would like to say to him.

    Dear Dr. Smith, (not his real name)
    I’m having some difficulty with the way you respond to me. I left my last appointment feeling defeated like you really don’t want me as a patient.
    I don’t understand why you won’t give me a definitive diagnosis. And why you are so quick to send me to Boston when my body does not respond to prescribed treatments.
    I feel like you can’t or don’t want to understand the level of pain I deal with on a daily and nightly bases just because there is no extreme swelling or tenderness in a joint. My constant pain is real and disabling and discouraging that this is my life at 60 years old.
    I don’t think you understand how very patient and hopeful I have been with your step by step treatments you have prescribed with no results. I am literally just barely holding on to my sanity from appointment to appointment hoping for some answers and results.
    In some ways I think you have not been proactive or investigative in response to whatever is going on in my body. Yes, you do plenty of blood work but then you do nothing with the results. When I question what something means you seem invasive in your answers.
    I understand that medicine is not a perfect science and that doctors don’t have all the answers but my hope is that we might work together to find answers toward my healthcare.

    That would basically be my letter in a nut shell. I need some input by folks who understand my dilemma. Or maybe it’s just the prednisone making me crazy. Thanks for listening.
    Marcia

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  • By Mariah Z. Leach Moderator

    Hi Marcia ~
    I’m so sorry to hear that you aren’t feeling supported by your doctor – that is a really frustrating and disheartening situation to be in. I personally think it is very important to be able to talk openly and honestly with your doctors about your concerns, whether they be about your treatment, the speed of your progress, or even your doctor’s “bedside manner” – especially if it is making you uncomfortable. If you are feeling too uncomfortable to bring these things up with your doctor out loud writing it down is certainly a valid way to work through your feelings. But I would also say that sometimes doctors and patients just don’t “click” with each other, even when given a fair chance (and 5 months sounds like a fair chance!) When that is the case it may be better for you to see a new doctor (if that is possible) rather than wasting your limited energy on a relationship that you do not currently feel is beneficial to you. I know the thought of starting with a new doctor is overwhelming in and of itself, though, so I guess it will be a balancing act of how unhappy the current situation makes you. So for starters, what about waiting a day or two and then seeing how you feel?
    Best of luck!
    ~Mariah~

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  • By Gretchen Heller

    Marcia,

    I completely understand your frustration with your doctor. My last doctor and my current doctor are pretty much completely dismissive of my symptoms. In my last appointment my doctor told the med student following him that day that I had “managed to convince (him)” that I had RA. Sadly I am stuck with the situation because of my health insurance. (I did not have to “convince” any of my doctors prior to switching my insurance.)

    I have come to the decision that the best course to take with my doctors is to tell them what to do. If I followed what my doctor wanted I would be on a constant dose of prednisone with nothing else. Forget that- I am really ill tempered when I am on prednisone.

    It just comes down to the fact that I know my body better than they do or ever will.

    While we all want to believe that doctors have our best interest at heart, our current health care system really seems to prevent them from having the time or the patience to really listen to us. Hopefully someday soon the healthcare system will improve so we can feel the connection to our healers that we hope to feel.

    I am currently reading “Mind over Medicine” By Lissa Rankin, MD. Which mostly discusses the idea that our minds have the power to heal us. But she also discusses a fair amount of how the current healthcare system is not geared to really helping us get well.

    It is an eye opening book- and I haven’t even gotten to the second section! But it has convinced me that I have to be the power behind getting the right treatments for me. It helps to remember that doctors are making educated guesses, they do not have absolute answers.

    Take back the healing power! That is my new philosophy.

    (It is nice to hear that I’m not the only one who has doctor issues. The doctor before the one I am currently seeing did bring me to tears every time I saw him.)

    I hope that you can either get your doctor to listen to you or can switch to a doctor that will.

    Gretchen

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  • By Mariah Z. Leach Moderator

    Hi Gretchen ~

    I’m so sorry to hear that you don’t feel your doctors are being as supportive as they could be! But I am glad that you have found the strength to advocate for yourself! It can be so difficult to advocate for yourself when you aren’t feeling your best but you are totally right that you do know your body better than anyone. I hope that your situation continues to improve!

    Best,
    ~Mariah~

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