My List Toppers

(First published on 9 June 2012)

Along with words I like, I keep a list of things people don’t know about migraines. I did not know many of the things about migraines until I started my list, by getting on the Internet, doing some research, and finding good sources of information. I read more updated books and articles, followed migraine journals, and brought myself up to date about the “condition” I had lived with for over 40 years. Now that I know it is not a “condition” or a “syndrome”, but a “disease that has no cure” I am re-evaluating my list. It has made me more aware of all the myths and misconceptions out there that I hear daily.

At first my list was about all the things people would say to me if I told them I suffered from migraines and might have to cancel our lunch plans on the day, should I be down with a bad migraine.  They were coming about once a week then (this was 15 years ago), but I was working, and I needed to let people know if I was not going to be able to show up for a meal, a class or be late getting to work.  My profession as a designer/artist has allowed me to be self-employed. Allowing time for migraines in my schedule has been easier than for those with regular jobs. The work still had to be done, but I could do it in the middle of the night if that was when my migraine ended. The arbitrary 9-5 schedule, except for client meetings, did not get me fired.  I also owned my design business, and could have others take over assignments should I be out with a very bad attack.

The list is still ongoing, but has morphed from the first book I started in 1994. Gone are the black and white composition books that still can be found in any local drug store or supermarket. My tastes have changed, and I now use those lovely “Moleskine” books which come in all shapes, sizes, and types of paper. I love the feel of the paper under my pen. A fountain pen has replaced the ball point pen. Writing is starting to become like drawing, which I have done almost every day of my life in some form or another. The pen is an extension of my hand on the paper. My writing implements need to mesh with my thoughts as they flow from mind to hand to pen to paper. It takes time to find the right tools. So far, this is a great combination.

A few items from the list in no particular order:

Q1. “Have you tried acupuncture? My cousin had migraines and it cured her in just 3 sessions.”

A1:  Your cousin did not have migraines. He/She had some variant of headache. “Migraine is a hereditary disease which has no cure.” I sometimes engaged in conversation to find out more about the “cousin’s migraine’s”. Later a firm, “Yes, I have tried acupuncture, and it did not help” plus a repeat of my first answer was what I say prior to changing the subject.

Q2: “When you want to stop having headaches they will stop.” and the  ever popular –

Q3: “Are you ready to stop having headaches?”

A2: (See first question.) Additionally, “migraines are not headaches”. I don’t always have the energy to explain why migraines and headaches are not the same, that migraines come with other delightful companions, like nausea, tearing, light and sound sensitivity, vomiting, auras that either occlude sight with jagged black & white patters, or make you think aliens are sending coded messages flashing in front of your eyes.  There are many different kinds of migraines which need a neurologist with a migraine specialty to diagnose. “Headaches” do not include all these other things. There are always other questions and comments in the middle of this kind of explanation, so it takes time and perseverance.  I sometimes think the questioner just wants to be “right”, and is not really interested in “knowing”. There will be a lot of “buts”, and cutting off my sentences, that cue me in.

I am thinking of preparing a little flyer or postcard that I can hand to people, just like the deaf people used to do for sign language. On it I will write the basic information, and a few places for them to get more data, should they really want to know, so I don’t need to argue with them about their cousin, their friend, their aunt, or someone they met on the bus. I want people to be educated. I would also like them to be interested when I take the time to explain. After all, they asked! I have not figured out how to breach this gap yet but will post it when I do. “I just have migraines, I’m not a doctor or anything.”  As if doctors know everything about migraines, and patients know nothing, no matter what they suffer through or research. I dislike the word “patient” so much I now refer to myself as “advocate” or “patient advocate”.  It is why we fill out all those forms before we go to see the doctor.

The reply to Question 2 is a bit more tricky. Answering a question with a question can often backfire, but it can also get someone to think.

A2: “Are you telling me that I want to have what you are incorrectly calling ‘headaches’?

A3: “Are you saying I can stop the migraines just by ‘being ready’. What does ‘ready’ mean, anyway?”

This can stop people, at least long enough to get the ball permanently in your court, in control of the conversation. This “new age” idea that everyone is responsible for their own illnesses, and can, if they decide to, cure themselves has been around for years now. I know someone who tried to “cure” Diabetes II herself, by stopping her meds.  She almost died and lost half of one of her legs in the process. When we spoke about it, her answer was, “I was wrong.” Nothing more. It was an interesting approach to something she did not want to discuss. I took her cue and now say, “You are wrong.” End of story. Then I change the subject. I never have gotten an answer to what “ready” means. Still waiting on that one.

Q4: “No, I’m sorry, but I don’t have time to….followed by some form of …”You have lots of time on your hands. All you have to worry about is your “headaches.”  (There is that word again.  Have they not heard anything I’ve told them?) The rest of us are working our butts off, and what you are dealing with pales in comparison to the rest of us have to cope with. How about lunch next week?”

A4: I love this one. It is often the reply when I am mid-migraine. A long, over 48 hour ordeal, and need someone to go to the store or walk my dog, or take 30 minutes out of their day to do something. After asking for help, this is a common answer, and I have heard it in many forms. That I might need help is most often refused, and I rarely ask anymore. As a single person living alone, I figure out ways to get things done. What I have changed is I am unavailable for these same people to do the “little tasks” (often lasting several hours) they need, in return for a dinner or as a way to see them, because weeks have gone by without more than a few short phone calls just to check in with each other.

Three or four hours out of my day, is my day. Dinner does not equal a lost day. I lose so many days, to migraines, recovering from migraines, to depression or fatigue. I empathize completely that others say these things to “protect themselves from that which they don’t want to know”. The truth about this or any illness is still a frightening subject. Merely listening to it is difficult for most people. They can or want to deal with only so much, and then, need to disconnect. As a visiting lama said after traveling all over the US, “Americans are very strange. They all know they are going to die, they just don’t believe it will ever happen to them.”

These are the most often repeated from my long list. After looking at it today, I have concluded that most people want to help.  Most of their comments, however misguided, are because they would like to give you information to stop the thing that is making your life miserable. They are hoping that the article in the “NY Times Magazine Section” last Sunday will be the magic bullet to stop your suffering. There are the occasional comments that are hurtful, like the last one I listed, if coming from someone you thought was a friend.

I don’t hold these comments against others, and let go of them as quickly as I can. We all need boundaries. Knowing how hard these things are to hear gives me greater compassion for those around me.  Discussing my hurt feelings I hold inside my therapist’s office where I can resolve the issue safely.

My list continues, my empathy grows, and the thoughts of a simple postcard or calling card I can use to educate others is starting to sound better and better. Designs are beginning to form in my mind. Perhaps even a series of calling cards, very 19th century. I no longer have a job to define my place in the universe, which in this country is the first thing asked after introductions are given. It is a way, my way, of staying in touch with people I care about, and give correct, current information about “migraine disease”.  Perhaps some of the myths will drop away from their lexicon, and in turn they can educate others, or contribute financially to the fight against this disease which may affect someone else they know.

Should they ever be in a situation during their own lives, and many will, where chronic pain comes to them, they can look at my little calling cards, and find the hope, courage, and strength they will need to see them through what I have lived with for most of my life. That is a karmic ripple in the pond I would like to start.

One of these days I may even get a call, saying “Now I know what you have dealt with all these years. I’m sorry I never understood.” I’m not holding my breath.