Dear doctor, I wish you understood even better than you do

Dear Doctor, I Wish You Understood Even Better Than You Do

As I’ve mentioned before, I am very grateful to have excellent healthcare providers on my team. My primary care doctor is vivacious and strong and smart, and she’ll never make me feel rushed at an appointment, even if her office is obviously busy. My neurologist may not be on any list of certified headache/migraine specialists, but she seems to keep up-to-date with research (which more than I can say for a lot of doctors!) and is open to hearing about how the illness is affecting my quality of life—she learns just not about the pattern of episodes I have but also about how they impact my present and my future. I’m not sure if she is a migraineur herself, but I know she has loved ones who are, and that always lends an air of extra empathy to each conversation.

My rheumatologist, whom I see for my psoriatic arthritis, is friendly and caring, even though I get the impression he may be quicker to prescribe medications than I’d like (I always want to go for lifestyle and dietary changes first).

Even the compassionate doctors don’t seem to truly understand

So yeah. I’m pretty lucky.

All that said, I get the impression that none of my main doctors have a true idea of what it really means for me to deal with migraines week after week, month after month, year after year. I will mention my writing and advocacy work for Migraine.com when at an appointment, and I’ll mention some of the common themes, worries, and symptoms the community members talk about. I get the distinct impression that my doctors care about my perspective but have never visited the site, and that gets me down?

Why should it matter? If healthcare providers are compassionate, smart, and well-educated about the illnesses they are treating, why should it matter to me if they do or don’t explore this website?

Migraine and patients could all stand to learn more

I’ll tell you why: I think that, in spite of their great compassion and openness, we all have more to learn. I think I, as a patient, should be better educated about new medical studies and ways experts are beginning to better understand the migraine process.  This information is at my fingertips, but I don’t take as much time as my colleagues here do to truly work to understand it. 

On the same token, I think my doctors probably know a great deal about the clinical side of migraine but would benefit from reading some of the community discussions about how migraine impacts everyday life for us. I want them to read about weird side effects we feel from commonly prescribed medications, side effects that aren’t listed anywhere on the drug’s leaflet. I want them to read comments from people who feel alone and alienated because their loved ones don’t seem to understand how very real this disease is. I want them to look for patterns in symptoms and flare-ups to see if they might get a better grasp on some triggers that aren’t yet on those highly-circulated trigger lists.

Do you ever wish your healthcare provider(s) would read up more on migraine? Are there any Migraine.com articles or discussions in particular that you think would be especially enlightening for your doctor to read? Please share in the comments below! 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • menopausalmigraineur
    4 years ago

    I agree with Theresa. Many of us have had migraines for many years and are far from being dumb or nonquestioning patients, yet even good doctors fall into the frequent habit of forgetting that we are the one MOST concerned with OUR body and quality of life. It’s not just a puzzle or ego trip for us….it’s whether we are well enough to go to our daughter’s engagement party or end up being so much like a narcoleptic sleeper from the new medicine the doctor insisted you try because (and before) he would even discuss with you a long known non-drug alternative help to one of the symptoms you were having.

    I do more research on the conditions making my life difficult than most doctors, and with a more open mind. And I can try palliative treatment options out quickly to see if they will help me or not and know my body’s responses thoroughly. As well as the differences in character and pain intensity and type between various headache causes. It would be nice if more doctors would argue with patients less and listen more.

  • The Migraine Girl moderator author
    4 years ago

    sdmp,

    Thanks for the thoughtful comments. I wish doctors would do a lot of things differently–a course in active listening might benefit all of them!

    I hope you’re feeling good today. Thanks again for taking the time to talk about this with us.

    -Janet G.

  • Christi
    4 years ago

    I’m off to see my Primary Care Doc, who has told me more than once, she doesn’t know anything about migraine. So once again I will try to get her to refer me to someone who does. I truly wish this website was a required reading website. What can I say, my family needs to read it also. Thank you for all the great information. Have a great day.

  • The Migraine Girl moderator author
    4 years ago

    Christi,

    Did you have your appointment yet? How’d it go? During my many years without insurance, I was actually somewhat free in that I could go to any doctor I wanted, and many of them gave a huge discount for all patients without healthcare coverage. Now that I have insurance, I have a plan where I can go to any doctor I want to without a formal referral (though some doctors out-of-network cost more). I wonder if you could seek the care of a specialist on your own, or if you *must* have a referral from your primary care physician.

    In any case, I am so thankful for your comments and also wish that my doctors would take the time to even spend a few hours on this site, especially reading about patient experiences.

    Take care; I hope you’re feeling well today.

    -Janet G., “The Migraine Girl”

  • Sean
    4 years ago

    Boy have you got this one right. I’m getting ready to try to get thru to my main/only Dr. at my annual next month without having to go to a specialist again. He doesn’t seem to get that acute migraines mean you can easily have more than 18-his current limit on my riza odt’s-headaches pr month. I get one just thinking about it a lot, counting how many I have left and kicking myself for going thru my emergency supply and worrying if I’ll be able to build it up again and it’s cruel really. He caught me off guard last time when he asked me how far I could walk before I was out of breath, I live in a rural area and have to drive to store or anywhere and I stupidly said I didn’t know maybe the length of the road along the airstrip outside when I should have said what I’d told him before which was not unless I try to walk up a very steep hill fast-I was a smoker at the time but it’s been more than a year and this time I’m making a list of all the things that are wrong with me since he mentioned some very old outdated info on me last time. They come in, put your usb info stick in computer and just start typing away and throwing questions and info out at you which can catch me off guard, but not this time. I’m making a list, going to make sure he makes some corrections or it may be find another Dr.- has to be Medicare for me- and he’s been ok in the past with me but that depends on his mood and it makes me nervous every time I have to see him which is every 3 mos. due to other meds I’m on and I’m just so tired of having to explain what he already knows re my migs and other not going to get any better disabilities.

  • The Migraine Girl moderator author
    4 years ago

    Sean,

    Thanks for your thoughtful comments. I wonder how often, if ever, doctors do any kind of role-play and really get a feel for what it’s like to be a patient as questions are lobbed at us at 100 miles per hour!

    I applaud your decision to make a list and try to assert yourself more at your next appointment. Let us know how it goes!

    -Janet G.

  • Teresa
    4 years ago

    I wish that I could make everyone in my life read this website. There is so much to learn for everyone, even people who have experienced migraines all their life. I have had migraines for over 30 years and I just discovered this site about 2 years ago. It opened my eyes so much. I still learn new things from other migraineurs. The fact that so little is known about migraines is the biggest reason that health care providers should jump at the chance to have access to all of this free information and research. Because I guarantee you that no one has done more research than we have, collectively.

  • The Migraine Girl moderator author
    4 years ago

    Well said, Teresa, and thank you for your thoughtful comments!

    -Janet G.

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