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An Open Letter to My Doctors

“Please don’t give up on me!” I find that thought going round and round in my head every time a doctor’s appointment is pending. It’s a silent plea that rarely is verbalized but which trails so many of us doggedly. Even when we’ve had good experiences with the medical profession this concept of “giving up” often lingers. Interestingly, it was a conversation with a pharmaceutical research scientist that helped me put it into perspective recently. He pointed out how migraine disease is often treated differently than other diseases. There is more of a tendency to give up, both ourselves, society and even healthcare professionals. It is more likely for people with migraine to be told to “accept” things as they are or accept minimal improvement.

Please don’t give up on migraine patients

Personally, I’ve been really privileged to see some of the top certified headache specialists in the country since moving to the USA. However, it hasn’t always been a smooth path and I frequently hear that from others also. There are frequent struggles with insurance, a sad lack of certified headache specialists, and, most frustrating, sometimes a discouraging lack of understanding.


Every time I hear someone say that their doctor has “fired” them I wonder, “How is that even possible?” And my heart breaks. For them, for all of us living with migraine, for our children who are at risk for inheriting it. We long to see change in the treatment of this disease and other headache disorders that are still so misunderstood, not to mention the other health conditions that so often tag along for the ride! Somehow, I’d like to try and reframe things – after all, wouldn’t you?

Reframing things

And so, here are some thoughts to share with our doctors as well as our friends, family, teachers, and employers. Maybe you resonate with some or all of these:

  1. We are not weak; we are strong!
  2. We do not give up easily, but actually persevere through unimaginable pain.
  3. We simply cannot always push through and even if we tried to, that may not be the safest thing to do.
  4. Please don’t feel like you always have to “fix” us; sometimes validation has the most powerful impact.
  5. We know that we’re stressed, but on those rare pain free periods an incredibly happy person emerges. Please don’t tell us to reduce stress – most likely, we’re already working on that!
  6. If positive thinking worked, we’d feel great! We truly would love nothing more than the placebo or any other effect to happen as long as it brings relief!
  7. If we’re afraid to try a new medication or treatment there’s a reason for that; it’s not lack of cooperation or unwillingness to “get better.”
  8. We know you’re short on time, but we long for you to partner with us in this journey and that means somehow finding the time to listen.
  9. We have hopes and dreams for our lives – hopes that are frequently challenged and dreams that often seem unreachable, but still we hold on to them.
  10. Sometimes the most powerful thing to say is, “I’m so sorry you’re dealing with this. I hear you and I’m not giving up!

Bright light in a dark disease

To those awesome doctors who partner with those of us living with migraine, cluster or other headache disorders, and who refuse to give up – we value and treasure your dedication and compassion more than you can ever know. You are a bright light in the midst of a dark disease, and you are helping make a difference for us now and for the future.

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

  • kateymac
    3 weeks ago

    This is EXCELLENT. I have to lay down now, with migraine, but had to say that. Hope to write more later!
    JUST PERFECT!!!!!

  • glassmind
    3 weeks ago

    Great letter and article. Thank you

  • ChelsR90
    3 weeks ago

    This is truly a great article, I have struggled with this so much seeing how I’ve been through 17 different treatments and none of them help. My specialist that I went to before I lost my insurance was amazing he helped me so much even with just my mental state because of how positive he was. He at a point wanted to refer me to a pain management group in which I cried because I felt like there was no hope, when he seen my reaction he told me he would keep trying! He is the reason I am still alive today because I was at my breaking point, to see that he cared enough to keep trying, helped so much! Thanks for this article I dont want anyone to give up hope, i hope some doctors read this!

  • j2jr5o
    3 weeks ago

    Thankyou Shoshana for your open letter it is so 100% correct and it also applies to our employers as well so the ones that can work getting. help and support from which is just as important !! i’m currently in the process of finding a new doctor and a new neurologist to find some answers and support . c

  • sapygirl
    3 weeks ago

    I HATE that folks may have to treat with doctors that go to lengths to help them. If anyone lives with chronic migraines in N.C., I overwhelmingly recommend Carolina Headache Institute in Durham (and promise they’d be worth a good distance drive). They spend @45 minutes with you (if you get botox), are incredibly knowledgeable, don’t milk you for their fee (surprisingly very reasonable for the length of time they spend with you), and very understanding. It can take a good while to get a new patient appointment but it’s worth it. I used to treat at “a MAJOR hospital in Durham’s” Pain Clinic and the comparison of the two clinics is like night and day in all aspects (also the hospital’s pain clinic charges @$8K for botox each time because they can add a hospital fee to the bill). Best wishes to everyone and it is so hard living with this!

  • deedeevee1
    3 weeks ago

    Totally awesome!! I’m going to share this with my pain mgmnt doc. He’s totally on the cutting edge of research and technology and refuses to give up. He tolerates my whining and refusal to cooperate and “upset the apple cart”

  • tonytoshiba
    3 weeks ago

    I had a great internal medicine doctor. She listened, paid attention and chewed me out because I wouldn’t see a doctor until I was past needing to be in the hospital. We worked together and my 80% constant migraine was reduced. I would have a week or two of peace. She retired, I didn’t realize how great she was until later.
    A few doctors and nurses then botox was introduced. Only a few migraines in a few months. Injections were on a 3~4 month cycle.
    Then I became disabled by Emphysema, things changed quickly and not for the better.
    I was getting injections and they were not working. It seems that the doctor decided a minute lidocaine would be injected instead of Botox. When brought to his attention he said he would not treat me because of my condition. He wouldn’t tell me my condition.
    I changed doctors as I am sure many of you have. We will continue and hopefully proceed.
    A nurse practitioner had me spray Capsaicin in my nostrils when a migraine was showing its ugly face. It worked well but I could no longer cook. I am a chef as a side line, no nose, no finesse or even good enough to serve.
    I now jar scotch-bonnet peppers. A bit of scotch-bonnet and the migraine runs with its tail between its legs. Hopefully this will help some of you. When you hurt your body sends out homegrown painkillers, internal opiates so to speak. Remember it is a chemical reaction and it is not actually burning you. A bit of buttered bread will pull the capsaicin pain away.
    Blessing, peace and may joy be with y’all.

  • Patricia7
    3 weeks ago

    Thanks for your honest and very powerful message! I think every person suffering with Migraines should give/send their doctor(s) a copy of this.

  • Savta45
    4 weeks ago

    Dear Shoshana,
    Thank you for writing this. You have put into words what I, & I’m sure many, many other migraine sufferers have thought. This disease is so often difficult for medical personnel. There’s no blood test for it. No CT scan that shows it. All they can do is rule out other problems. It’s diagnosed purely on the history the patient offers. Different sufferers experience the pain differently. Some people actually ARE addictive personalities, & providers have to keep that in mind when prescribing pain medication.
    I think that, between all of the above, it gets overwhelming to them sometimes. That, & the somewhat limited options available to them as treatment modalities. Fortunately, there is progress being made on that front.
    All that said, however, I do agree with you, that very often, providers need to really SEE & LISTEN to their patients much more. There’s always a time constraint. But, use the time wisely. Use it constructively. Be there for your patient, even if what that means is commiserating & telling them that you & they are a TEAM, & they will NEVER give up on you! Brainstorm TOGETHER. Let the patient know that you are in their corner. It can make the world of difference.

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