A Letter To Patients With Chronic Disease from An Experienced MD

#HonestCommunication

About three months ago, I stumbled across a really interesting essay written by Rob Lamberts, MD on his blog at Musings of a Distractible Mind. The essay discusses in-depth and honestly how chronically ill patients remind doctors of their own humanity, fallibility and failure. This is something I have understood for a while but not been able to put into words.

Now that I have finally found a primary care provider who respects me and who I respect in return, I am a lot more hopeful about my future. All as a result of my ability to put trust in her. I do not, however, expect her to fix me or even necessarily tell me what is wrong with me. I do believe she is doing her best to figure it out, and she seems to believe my pain. Ahhhhh, miracle of miracles, I found a healthcare professional who actually cares! Novel, exciting, and entirely needed. 🙂

It seems the missing part of my previous relationships with doctors (not all of them, some of them are just plain jerks): I needed to show them the compassion I wanted to receive in return. This is just an excerpt from the wonderful words of Rob Lambert in A Letter To Patients With Chronic Disease:

(http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease)

…We are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain –  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

-Rob Lamberts, MD

Written July 14th, 2010

(Read the essay in it’s entirety at http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease.)

So there you have it; part of the reason why you scare your doctor/nurse practitioner, the reason why you make them uneasy, agitated, and defensive. The author of this letter isn’t blaming his patients for making him feel like a failure, but he does go on to give us some tips for creatively gaining some ground with our doctors and reducing the tension in the exam room so everyone can behave like adults and no harsh “I don’t know what to do, your situation is just too complicated” gets thrown out there. Phrases like that effectively shut down communication and trust between you and your doctor. It’s as if they just slammed a door in your face. Of course, when we collapse into hysteria and start screaming for someone to fix us (um…. yeah, that might have happened, maybe…), that sort of thing can also shut down communication pretty quickly, just for example.

The step by step tips the author gives for cultivating a good relationship with healthcare team members should help to get things off on the right foot with a new doctor, or even mend a relationship with one of your current doctors. The latest poll of MD’s from 2013 Pain Report found that 1/4 of primary care doctors believe that all their fibromyalgia patients are exaggerating or even faking illness altogether (yikes!), so there is always that chance that you could be stuck with one of those jerks. In which case, don’t mend anything, just BAIL. Get out!!! Find someone else. Search the chronic illness support groups in your area for suggestions of primary care options who take your health insurance. (Hint, those support group websites often have lists of local lawyers for helping you file for disability and even local charities that can help with food, electrical, and mortgage/rent costs.) Then, once you’ve found a new doctor, use the author’s suggestions to build a rapport with him or her..

I know how frustrating the search can be, but I can promise you there is a huge, staggering, massive difference between a doctor who is a bad fit and the right doctor. Even with the right doctor, part of being chronically ill is understanding that no one understands us. We are always, to some extent, alone in our illness. Each of our pain is unique, it is not like anyone else’s pain. No two match up exactly. Therefore, no doctor will have the same take on it as the next. This is one reason why the author advises that chronic pain patients keep their eggs in just a few baskets; only seeing the same few doctors who are all in connection with each other and can actively manage your illness instead of bouncing from specialist to specialist to specialist.

Part of the shift towards receiving better care requires that we as patients always remember that the person we’re dealing with, underneath the title that shows us they attended a lot of school, is a human being who is capable of making mistakes and feeling guilty, defensive, or embarrassed by those mistakes. It is not our job to puff up our doctor’s ego by saying they did a good job treating us if they did not, However, it is also not our job to tear them apart when they are trying to do their best, even when we are just desperate for them to pay attention to our agony. Trust me, I get that, I have been there for more than a year straight not that long ago; just a total mess in every doctor office I went to, and every visit was a bad one that year. I left in furious tears far more often than I left composed.

Instead of going in dreading and fully expecting a fight, now I strive to help my doctors, nurses, and specialists more easily understand me by following some basic etiquette and planning for my time with providers more carefully. Thanks to the author of this article I am lucky to have found a great doctor-patient relationship with my new primary care who is a joy to see. She holds my hand when she has bad news, she is warm, compassionate, smart, and determined. I finally have an ally in my primary care! Finding such a gem of a nurse practitioner does not end my struggles with chronic illness, but it is a huge relief. Now when I encounter a doctor I cannot see eye to eye with, despite practicing compassion towards them, I am much more confident in identifying who will work with me and who is too jaded or disrespectful to be a good fit. I’m still learning how to implement all the advice the author laid forth so clearly, but after years of bad doctors and me being a bad patient in response, I think the cycle is broken.

A Letter to Patients with Chronic Disease is one of those essays I would recommend to all patients with chronic conditions, and it is one I wish I had read earlier in the onset of my illness. It found me at the right time, though, and I am so grateful.

In case you need to copy and paste the address of the original letter, here’s the url: http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

my dear friend, A Body of Hope, wrote a companion piece explaining with a touch of humor just how frustrating it is to depend on doctors, and a clip from Twin Peaks (eep!) making it all clear as day.

Here is the her post: Warm Milk: Physician Frustration. Head on over and check out all of her insightful and inspiring posts. Her sense of humor is flawless, and I am always and forever in debt to her for helping me get started here.

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

16 responses to “A Letter To Patients With Chronic Disease from An Experienced MD”

  1. abodyofhope says :

    This was excellent. Thank you for helping to understand the doctor’s point of view better. And helping me to better try to communicate with my physicians (hopefully).

    Liked by 1 person

  2. Jessi Finds Out Fibro says :

    Thank you so much dear! It takes a while, but things from his original essay might pop out at you while you’re talking to your doctors, and each little pearl of advice he gives can be a game changer when it is wielded in the right situation. The struggle with putting trust in doctors is a real huge one for me. It’s my body, I own it, and it is traumatic when anyone else tries to make decisions on behalf of it. However, I do trust this new doctor a lot more and she is so much more compassionate, it just makes me want that kind of doctor-patient relationship for everyone living the spoonie life. I didn’t even know it was possible until I decided that was what I wanted and started looking for it in the right ways.

    Liked by 3 people

  3. abodyofhope says :

    Yes, I see what you mean for sure. I hope you start getting more and more balance with your helath care professionals in time so your personal well being and quality of life is better balanced.
    I’m at 10 years almost to the day. I used to be all about being an advocate for myself. Working WITH my doctors, etc. But the past 3 years broke all of that to pieces. Everything I thought to be true is inside-out now. But I do still have to have a relationship with doctors…
    I shared your article on the RSD support group again and they enjoyed it and it sparked a discussion. A few people shared it from there as well. Hopefully each of those people who read it will have better Dr visits because of YOU!

    Liked by 2 people

  4. waxingturtle says :

    I searched and found the origin and doctor who wrote this letter, it is very long, but it’s great!
    http://updates.pain-topics.org/2013/06/a-doctors-view-of-patients-with-chronic.html
    I think I’m going to make a page on my blog just for this letter!
    Thank you for sharing!

    Liked by 2 people

    • Jessi Finds Out Fibro says :

      I did try to link to the original article, which is actually at http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease. I probably should have just left the link written out like that, not just hidden throughout the post. I will go back back and fix it so the raw link is at the top of the post as well. Haha, thank you! I was wondering why only about 39 people had made it over to his website from mine!
      His blog is great, but this one in particular is a gem. It is at the top of my Resources for Chronic Pain page which is still not live yet b/c I have hundred of links to add to it still. That letter is the perfect place to start though!
      I have another few articles/posts/essays to share that changed life for the better post-dx! Maybe a series (but next time I promise to remember to put the plain link at the very top so people can find the original easier!). I really don’t care if people read my summary and the tiny excerpt I took from it, I really just want every single person to have the opportunity to read the full letter as it was written. I’m gonna have to go back and work on this one… I wasn’t sure how it was gonna be read. Thank you for the feedback! 🙂 I would never have figured that out otherwise!

      Liked by 1 person

  5. abodyofhope says :

    I just wanted to let you know, I linked your post to my entry. I had already written it, but we are often on the same pg 🙂 And your article is perfect supplementary reading. I hope you don’t mind. Here is the link:
    http://abodyofhope.wordpress.com/2014/10/22/warm-milk-physician-frustration/

    Liked by 1 person

  6. abodyofhope says :

    Thank you so much! I appreciate all of your kind words ❤

    Liked by 1 person

  7. pattyalcala says :

    This is fantastic. A doctor who is getting real about treating patients with chronic illnesses. Thank you for posting this. I am going to reblog on my site for children and their families. ❤️

    Liked by 1 person

  8. pattyalcala says :

    Reblogged this on I Am Not Sick Boy and commented:
    This is a post that was on ‘finding our fibro.’ Please give it a read. It is an honest and open dialogue from a doctor to a chronically ill patient.

    Liked by 1 person

  9. errinspelling.wordpress.com says :

    that’s a very nice dr., but in the late 80’s & for 500 years before that, hardly anyone in america knew about fibromyalgia. i happened to have a rheumatologist who has it himself & sent me to his P.T.who specializes and a dr. in charlotte , who was the lead dr. in CFIDS…..but all other doctors i was told, if they don’t know how to cure it ,think & say you’re crazy, even after 11 car wrecks….so i never told dcotors & then when i got ill from toxic molds, i’ve had doctors say why didn’t you tell me about fibromyalgia & i had no idea how many doctors today know about it…..except 1 idiot P.T in orlando.

    Liked by 1 person

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