Dear new doctor…actually scratch that formal dear business

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You can read an updated, more universal version of this piece over at The Mighty.

I read this article written from a doctor’s perspective earlier this week and while none of it was a surprise to read, it really resonated with me. Since having recently learned that my family doctor of 23 years is retiring at the end of this year (with no one to replace her…eek!), I’ve been thinking a lot about the whole dynamic between doctors and chronic illness patients. So, of course, I put those thoughts into words.

Dear new doctor,

…Actually scratch that formal “dear” business. I tend to use a more familiar greeting when writing letters to anyone who is privy to the inner workings of my intestines and my ovaries…because of course I write a lot of letters to people about those very topics and thus have determined that a more familiar greeting is appropriate…

You don’t know me yet, so let me just clarify that I’m kidding. I don’t actually write letters to people about such things.

So anyway!

Hi new family doctor!

I am sincerely pleased to meet you. Even though I’ve seen a lot of doctors before you, I’m excited by the possibility that you might have ideas and options for me that no one has ever mentioned.

I’ve got to say, though, I’m also rather apprehensive.

You’ve probably noticed by now that my chart is fairly…uh…lengthy…and you might be wondering what you are getting yourself into by accepting me as your patient. I’m not the kind of patient that can be easily fixed and I know that can be really disheartening and frustrating. I get disheartened and frustrated, too. Look at that! We have something in common!

Here’s what I want you to know about being my doctor.

I don’t expect you to already know much about my illnesses, and actually it’s very possible that right now I know more about them than you do. Please be okay with that. Consult the internet or talk to other doctors to learn more if you want, but when it comes to understanding how my illnesses affect my life, talk to me. And even if you are already familiar with managing these conditions, don’t forget that my body didn’t read the textbook chapter on “how to have gastroparesis, POTS and EDS” before it decided to get sick so it might not follow all the rules.

Keep in mind that the 10 minutes in which you see me is just a snapshot of my life. You might see me at my best or you might see me at my worst, but most of the time you’ll probably see me somewhere in between. Please don’t make assumptions about how I am doing based on whatever snapshot you happen to capture that day. Just as my frown does not imply the presence of depression or defeat, my smile does not imply the absence of worry or pain. I smile a lot. I laugh a lot. But I still understand my reality, and I need you to understand it, too.

You might be scared of me because I have a chronic illness, but you should know I’m scared of you for the same reason, because I have a chronic illness. I’m scared you won’t trust my instincts and will treat my concerns as overreactions. I’m scared you might confuse not being able to fix me with not being able to help me at all and then give up. I’m scared you will think I’m lazy or just not trying hard enough. You see, I can be as well-informed, empowered and proactive as I want, but I have no power. I can’t prescribe meds, order tests or make referrals. I need you for that. I have the day-to-day-living-in-this-body experience thing going for me, while you have the foundation and education, and you have the years of experience treating other patients. I know that you can see things I can’t because you are not living it day to day, and I respect that. I hope you will try to see things through my eyes, too.

I know that you are human and I promise not to hold that against you. I know you make mistakes and I’m okay with that. Sometimes I’ll catch your oversight, but that doesn’t mean you aren’t doing your job as my doctor, it just means that I’m doing my job as a well-informed patient. I know you won’t always have the answers and I’m okay with that, too. I don’t expect you to know everything, but please be honest with me about it instead of giving me a confusing and round-about answer. I also know that you won’t always be able to help me. Sometimes at the end of an appointment you will feel helpless. That’s okay. The next appointment will be better.

But I’m human, too, and sometimes I get defeated. Because I know that things could be worse, sometimes I forget that I’m allowed to wish things were better. And sometimes I stop fighting for them to be better. I lose hope. I need you to fight for me when that happens. Remind me what determination and perseverance look like.

Please know that I will always appreciate you giving your time to help me. I know it’s your job, but I’m grateful all the same. I see a lot of doctors, but I know that you are the one with the most comprehensive view. You are the one looking at the big picture and you are the one keeping me from falling through the cracks. I know there will be lots of trial and error, confusion, and paperwork…and I’m really sorry about the paperwork…but there will also be successes and milestones. And joy. No matter what is happening, no matter how sick or healthy I am, I promise you there will still be joy.

That doesn’t sound so bad, right?

Oh, and just in case it helps, I also come with a free supply of dishcloths, hats and scarves.

18 thoughts on “Dear new doctor…actually scratch that formal dear business”

  1. I know I’m a little late to the party but I just found your blog now. But this post sounds exactly like my experience so I totally relate to this particularly traumatic experience. I too have an invisible illnesses (ME/CFS, Fibromyalgia with a sprinkling of Central Sensitivity Syndrome just for fun!) My doctor also retired last year after almost 25 years (so selfish, right?!) and I was faced with the same situation of having to first find a good GP and then “train” them and worrying if I would be understood. And then a few months later, she moved to Kelowna. Gahh! Thank goodness someone else in her office took over her patients and so far the new one seems okay but really, it’s so unnerving starting from scratch again. And you’re so right, Catherine – humour is soooo important for getting through this stuff!

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    • Haha well welcome to the party, whenever you join 😀 I just checked out your blog and then made my way to your Ravelry page and oh my goodness I’m just swooning over all of your amazing projects!! [insert heart eyes emoji here haha] Seriously so gorgeous! I really want to learn to knit, but I must confess what’s stopping me is that I’m already good at crochet and I don’t feel like being a beginner again 😛 But you’ve reignited my desire to learn!!

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  2. I read this on The Mighty. I tried to comment there to no avail. You my dear are what kids these days would call “da bomb.” Thank you! Brilliant article, absolutely the best I have read re the ins and outs of a doc/pt relationship. So balanced and full of truth. I want to share it all over the tubes, I wanna print it and hand out copies! As a spoonie as well as a health care worker, I find the extremely relatable to both sides. Big fan, I look forward to reading more from you. You’ve got the gift! 🙂 Warmly, Jeni

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  4. I just recently had my family doctor, well,, lets just say she isn’t my doctor anymore (and I still cry when I talk or write about it, it was a bad betrayal), so Im looking for a new doctor. I’m still looking for a diagnosis, so the bit about trusting my instincts is key. So many doctors just don’t believe me that I KNOW if a reaction is going to go anaphylactic (I have MCAS, I think), but no, they just feel the need to wait and see. And every one that does regrets it because I scare the crap out of them by going into my weird anaphylaxis right then and there. And they never forget it. I swear, it has changed more than one person who has seen it, at a fundamental level. It’s not a pretty site.

    But how the hell do you tell a new GP that “By the way, I go into anaphylaxis on a regular basis…. It’s really atypical anaphylaxis- it looks a lot more like I’m having a seizure. But I’m not. And I can hear every word every person says, but I can’t talk. In fact, I will get completely paralyzed if we push it- and that includes my larynx and my lungs. But it’s no big deal- as long as you don’t withold epi, I’ll be fine.” “Oh, and It’s not an ‘if’ i go into ana in your office- it’s ‘when’.” I’d NEVER find anyone!!!

    Karen

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  7. Hi Catherine,
    I’m so sorry that your PCP is retiring – it sounds like you’ve had a good (or good enough) relationship with her.
    I love your letter. It speaks such truth from experience as we all have when living with chronic illness. Would that this was how doctors were also trained (I was a family doctor once and left the practice of medicine for a number of reasons, one of them being how little time there was to really connect with people and to be able to deeply listen).
    I just started reading a book recently out that has stellar tips on managing one’s health care – it very much applies to those of us with chronic illness and gives some great examples. You’ve already written about how you’ve worked diligently at being proactive and finding a doctor that will actually listen and help. This book might have additional helpful tips:
    The Patient’s Playbook: How to Save Your Life and the Lives of Those You LoveSep 1, 2015
    by Leslie D. Michelson

    Wishing you all the best in finding a wonderful, attuning, listening new PCP

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  8. Such a valuable lesson for any health professional who will work with a client/patient with a chronic illness — thanks for the insight! 🙂

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