Set Up your Migraine Support System - Talk to the People Who Matter

There are several kinds of support you need to live with Migraine disease; one is what I'll call structural support (like toolkits, systems, schedules, routines, diaries), another is people support. I'm going to talk about people support today.

It's lonely dealing with a disease that eats away days and weeks of our lives, and isolates us where the sound and the light won't bother us. Treating Migraine takes managing multiple aspects of our lives and health - and that takes support. The people who support me remind me that every day will not be so bad, that life is still worth living, that there is hope. But for them to do that, I have to let them in on the secret. The people in my life need to know what goes on in my head, for better and for worse!

Here's a New Year's Resolution for you: Tell the truth about your disease this year! How many of us are in a state of conflict, hurt feelings, or even losing relationships with the people in our lives who don't know the truth about our disease?

What do I mean by telling the truth? It may be that many of us would be better off if we didn't have to work, or care of our families, if someone else would care for us, or pay the bills, but we just don't live in that reality. Telling the truth doesn't mean you have to deny your reality, or not deal with it. There may be many things that you have to let slide, and telling the truth may involve reminding yourself that if you exacerbate your disease through overwork, lack of rest, not caring for yourself, then none of the other things you value will be possible. For many of us, the truth is we must put ourselves first, and that isn't some kind of nasty self-indulgence, it's not "No I can't take care of my child I have to watch tv and eat these bon-bons," it's "I must care for my well-being or there will be none left of me to care for others." It means put on your oxygen mask first on the air-plane or you will both be dead!

When we talk to the people in our lives, we need to tell them the truth about these things as well. About what we can and cannot do. About why we can or cannot do them. You may not want to answer "How are you?" with complete truth in every situation - there may be reasons not to do that at work or in some social situations. But practice telling the truth about who you are to yourself, and to someone! Find a friend or two you can tell. Write it in a journal, or in your own blog. But practice telling the truth.

And remember that there are people in your life who need to know the truth about your disease as well. You may want to practice telling that truth to yourself first, but your spouse or significant other, your parents or children or siblings or best friends, need to know some basics.

• They need to know if you are a Migraineur that you have a neurological disease which you cannot control.
• That when you have a Migraine attack you experience extreme pain, nausea, dizziness, whatever the particular symptoms are for you, and that you must treat it and avoid light, sound and stimulation until it passes.
• They must know something of the dangers of leaving a Migraine untreated.
• And they need to know that you are not doing this on purpose, to avoid being with them, or work, or obligations, that you wish you didn't have this disease, that you appreciate everything they do for you, and that you need their love and help and support.

If you can keep the conversation about your disease and asking for their help and understanding, and keep any hurt or accusations about past actions out of it, most people are more receptive. I can promise you, though, that it is important to take this step. More hurt feelings and lost relationships come about from not trying, from failing to communicate, from wishing, hoping and expecting the other person to understand. There's no way around communicating, scary though that may be.