Dear neurologist,
I am writing this letter to you so that you might better understand our relationship and the emotions that I am experiencing when we meet. I know that you see hundreds of patients each year, but you are the only neurologist that I have met. I might have a ‘routine’ migraine from your perspective, but from where I am sitting, there is nothing ‘normal’ about my current life.
First, let me start by congratulating you on the enormous effort that it must have taken for you to get your name on the door. Your intelligence and your training genuinely leave me humbled and in awe of your expertise. Please believe me when I say that I am incredibly grateful that you have taken the time to be my care provider.
Know also, however, that I am feeling a variety of other, conflicting, emotions when I arrive at your door.
If this is the first time I am seeing you, then I am terrified. It is from you that I might hear words such as ‘stroke’, ‘tumor’, ‘incurable’ or ‘inoperable’. Although I understand that the chances of this are extremely unlikely, rest assured that I have lost hours of sleep imagining myself to be that unlucky.
I am also exhausted. Not only from the lost sleep, and living with chronic pain, but also from the medical treadmill that I have travelled to get to you. Pain rarely draws a straight line from symptom to cure. Know that I have spent a lot of time with a variety of pharmacists, general practitioners and specialists. Each has poked, prodded, and nodded. Some of them have been skeptical, some outright rude. One of them eventually referred me to you. Moreover, between each appointment was a waitlist and a waiting room. It has been a long path to your office, but I am a patient patient.
Know also that I am desperate. If the pain has been going for a long time, then it feels to me as if I have ‘tried everything’. In addition to the doctors, I have been to physiotherapists, acupuncturists, naturopaths, and nutritionists. You might be tempted to roll your eyes at my visits to the iridologist or for paying to have my mouth-palette pressed by an intercranial masseur but recognize it as a sign of the lengths I will go to in order to heal.
You should also know that I am incredibly hopeful. In fact, I have ‘pinned all my hopes on you’. With every atom in my body, I am wishing that you will give me a ‘magic pill’, an ‘easy option’, a ‘surefire’ way to get better, so that this pain will be over soon. Instantly would be great. I don’t understand the science behind what is happening to me, or what science can do to make things better, but I feel that if science can put a man on the moon, then surely it can take my migraine away.
At the risk of sounding rude, can I also remind you that I might be slow, but I am not stupid. My migraines make me confused and easily overwhelmed. When you point to charts, read out numbers, or throw medical jargon around like confetti, I appreciate that this is all ‘straight forward’ to you and that you are working efficiently within an allotted timeslot. I, however, have no training in this area. I am doing my best to keep up, but the terms that would be unfamiliar to me at the best of times, are impenetrable to me when I have a migraine. Perhaps providing a handout (or the web address of a reliable blog) at the end of our appointment might give me the chance to better absorb the information, later, at my own pace.
Lastly, I ought to tell you that there is a high probability that I might also be disappointed, upset, resentful or even enraged when you ‘don’t deliver’. For all the reasons above, if your advice to me is not a ‘quick fix’ I will not be happy. It might take some time for me to process these negative emotions. Negative emotions, which you should remember, are now piled on top of the ones I already feel (including all those listed above, plus the shame and guilt I feel knowing that I have not been able to fix myself).
At the risk of telling you how to do your job, please remember when patients come into your room to be sure to meet and greet them in a way that lets them know that they have your full attention and that you are going to treat them as an individual, not just ‘another patient’. Choose your words carefully. “Thanks for coming, it’s nice to meet you”, sounds polite enough, except not today – there is no joy in this meeting for me. “How are you?” might be better, but for all the reasons noted above, there’s no guarantee how I’ll take it.
When you give patients a ‘to do list’ make it as clear and actionable as possible. There is no point telling me to start jogging to improve my cardio if I struggle to get out bed. It is OK however, to present a list like a ladder with rungs that I can slowly climb up. Maybe suggest meditation and stretching while I am bed-bound, then Yoga and therapy when I am up and about, and jogging (if you must) as a stretch goal for when I’m feeling much better and ready to let my head get all ‘jiggly’. If you ask me to do something I feel uncomfortable with, there’s a risk that I won’t just ignore that task and cherry-pick what to do, I might actually throw out your whole list and abandon the path ahead. Call me petulant or naive, but that’s the truth.
Lastly, when you farewell your patients, know that they are experiencing all the emotions already noted, but above all, they are worried about their future and concerned they will have to heal alone. If you say something as harmfully-harmless as “it was nice to meet you – good luck”, to a patient as they leave, it’s unlikely you’ll be getting a thank you note and chocolates in the future. Instead, remind them to have faith, that they can heal, and they are not alone. A big hug is not appropriate, but imagine sending them lots of positive vibes regardless, and give them a reminder that you believe in them and their ability to heal. Maybe hand them the equivalent of a ‘get well soon’ card that includes a list of contacts that can act like their support team (including migraine websites, local meditation classes etc.)
Apologies if this letter made you feel uncomfortable. Perhaps in a bitter mood I would say; ‘welcome to my life’. But I would prefer to finish with emotions relating to being optimistic and kind and say again that I am truly grateful for all that you do, even if I don’t always remember to say so.
Thanks in hindsight… and in advance,
Linda (and maybe a few other people with migraines who share my opinion).
The Mindful Migraine 
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