Some stories stay with us because they help us see what often goes unseen. This is one of those stories.

The letter that follows was written in 2008 by a woman living with chronic migraine. I’m sharing it to bring visibility to the realities of invisible illness and the quiet ways it can shape a life. If it resonates, I hope it offers a sense of recognition…and if it doesn’t, I hope it opens a small window into an experience many carry silently.

To My Thief May 13th, 2008 For 20 years you have stolen from me – and in return pain and dismay. You steal from me. You come silently day after day. Some days I wake up and you are already here, other days you make a surprise visit in the middle of the night. Sometimes you stay only a day; frequently you stay several days. Then as mysteriously as you arrived you disappear for several days, if I am lucky maybe a week, but you always leave your mark and you always return, that is guaranteed. I live in a constant state of wondering if today is going to be the day that you strike again. You first visited over twenty years ago – you came out of nowhere with no warning and for no reason. I must seem an easy target for you to have persisted so long. You are heartless, callous, and relentless. I often wonder why me, what did I do to deserve this but I am thankful that you have not seriously harmed me – yet. Current research may tell another story. You have followed me everywhere – on airplanes, into hotels, on family vacations, even overseas – how do you do it, why do you do it? I have 2 crack detectives on the case to track you down and rid you from my life forever. One I like to refer to as my Sherlock Holmes – he has been on the case for about fifteen years. The other – my Hercule Poirot – he has only been after you for about a year. Nevertheless, I am confident that one of them will track you down – eventually. I update each of them on your activities regularly, they take notes, examine the after effects of the crime scene, ask questions, make suggestions, offer preventative measures. We set traps – but you evade them. We have used avoidance techniques but you have become wise to them. Some it seems are hopeless; at others, we are optimistic. You not only steal from me – you steal from my husband, my family and friends, even my colleagues – they become an accessory to the crime without even knowing it in some cases. So what is it that you have been stealing from me all these years? And what is your infamous calling card? In twenty years, you have stolen from me some 2400 days – that’s about a third or put another way about six and a half years. On average ten to fifteen days a month and you are not picky – you can come at any time seven days a week, 24 hours a day – holidays and special occasions included. And what do I get in return? Your calling card – aura and pain; searing blinding pain, flashing lights, nausea, head feels like its in a vice, throbbing/pounding head, sensitivity to sound – all sound is amplified, a red-hot poker is being slowly pushed and pulled in and out of my head, dizziness, pain comes and goes in waves, inability to function, and so on. It’s a Chinese menu – take your pick. You have single-handedly interfered with dinner plans, exams, work events, days out, travel plans, classes, family events, romantic evenings, plans to learn new things, plans for a quiet night in, exercise, seeing friends, reading a book, watching a movie, writing a letter, eating, sleeping – living. You are quite a powerful force for something silent and unseen by others. Sherlock Holmes has been attacking you with drugs – over thirty in all. And in turn the drugs steal from me – side effects – gain weight, lose weight, loss of cognitive skills, make things harder for me, depression, and more. Hercule Poriot prefers the drug free route and he goes after the cells with injections to try and free up nerves and muscles and recommends such activities as yoga to stretch out the body naturally. If you know anything about these two great detectives you know why I refer to my doctors in this way. There have been other detectives along the way that have tried to track you down but you have eluded them as well – food allergists, chiropractors, naturopathic doctors, and acupuncturists. You have eluded even the emergency room doctors several times. And then there is the affect that you have had on my friends and colleagues along the way. Some understand who you are and what you do others don’t and think – who knows what they really think – perhaps they think I am a hypochondriac or a grumpy lazy person or just a plain freak. Shortly after you arrive I find it extremely difficult to communicate with people – this is when they probably think I am a freak – wonder what is up with me. “Oh, she’s gone into her shell again.” Then once the drugs kick in – if they do – I usually fall asleep – great party person! If the drugs don’t work – pain. Can’t win. And then there is the dollar side of all this. I cannot imagine what you have cost the insurance companies and me over the years. My drug co-pays run about $1000 a year not to mention any doctor’s visits, procedures, and ER visits. What if I did not have insurance, the treatments, procedures, and drugs you cause me to require are expensive, and in all cases, there are no generics and no over the counter alternatives. No herbal remedies have been found to date that will scare you away and believe me we have tried. Why won’t you just go away? They say – whoever they are – that one day you may just leave as suddenly as you arrived. But until then I guess Sherlock, M. Poriot, and I will have to keep looking for that illusive miracle to make you go away. I would like to be able to wake up and not wonder if today is the day that you will strike again. Oh, to be able to plan a vacation without having to count out pills and worry if I have enough preventative medicine to last and wonder what if the trip gets extended for some reason – will I be covered, will I have enough attack medicine to see me through, will I get all this paraphernalia through airport security – what are the rules today – plastic bags? My prescription is out; I can’t get a refill in time for an overseas trip – what now? I have to rely on samples from the doctor again and a Fed-Ex care package from my husband but not before you make a cruel and extended visit in the absence of my somewhat protective drug barrier. The insurance companies do not understand real life – they only live in thirty-day refill cycles. If you make more frequent visits – tough – I run out. I get six attack drugs per thirty days and that’s it, which may cover three of your visits or maybe five if I am lucky. I would love to not have to make sure that I have three types of drugs in my purse before heading out to NYC for a meeting or to town for dinner and a show or even for groceries. I wish…. Oh, how I wish. Some days I want to cut off my head – but then you would win and we can’t have that. We can only hope that the good detectives will prevail, find the miracle that we are searching for and catch their quarry before too long or that you will simply tire with inflicting migraines upon me and move along – hopefully not to some other victim. I will never get back what you have stolen from me but don’t you think its time to stop stealing from me and let me have 100% of my day’s drug and pain free? Give me back me. Go away and stay away. Please. From one migraineur to another.