You just don’t understand…
Most of the Migraineurs I talk to deal with the same problem. It’s not the physical pain that our attacks cause, although that can be so bad it disables us.
No, the pain that often causes the most damage is when a loved one doesn’t understand what we’re going through.
I think most people are surprised to learn what an impact they have on the Migraineur (that’s us) that loves them. While their world remains the same, our world shrinks and shrinks. Bits of our lives disappear as the monster gets stronger. We treasure every last tiny tidbit of the lives and people that we had before the Migraine Beast. It can get so bad that we hang on with all our might to people who are no longer good for us.
There are two types of people who don’t understand us… those who want to, and those who don’t.
Those who want to understand us need to be educated. This sounds easy, but the reality is quite different. One reason is because most people already have a preconceived notion of what they think Migraine is. This is where the two groups split. Those who listen and ask questions are those who want to learn. Those who find an excuse to end the conversation are not interested in what you have to say.
There are many different ways to handle someone we want to educate. We can:
- Sit them down and start a conversation — I suggest doing this when you’re not Migraining and when and where everyone feels at ease.
- Ask someone else to sit them down and start a conversation — I think someone close to you is great, but it should probably be on the other person’s turf so they will feel they can engage and ask questions and not feel threatened.
- Wait for them to ask a question — This is the patient person’s approach as most people don’t know what they don’t know.
- Educate them by osmosis — piece by piece allowing them to see our experience first-hand through time and telling a little as we go. This is the gentlest means.
- Send them to a website or hand them written literature — If you don’t sit there and watch them read it, they may come away just as confused as they started. If you do, you’ll likely seem pushy.
- Wait for them to look it up themselves — this rarely happens without prompting.
- Ask them to come to the doctor with us — This allows them to ask questions of the doctor, thereby eliminating all chance we could be *elaborating* on the severity of the disease.
- Ask them to come and care for us when we are Migraining — This can be helpful or make things worse if the person thinks it is a mental or emotional issue.
To begin, I usually ask the person, “Would you like me to explain Migraine disease to you?” You can also tell them, “You are such an important person in my life, I really would like to explain what is going on with me. Do you have the time?” This is often just after I’ve said some *amazing* factoid like — “There are 37 Million Migraineurs in the US and not even 400 Headache specialists to treat us” that has gotten their attention.
What works for one person will epic-fail with another.
The most important thing to do is get the conversation going. Once it starts, it usually gets easier and easier. I’ve started the conversation by handing over a list of potential trigger foods before a family dinner. That piece of paper is a great ice breaker.
Some people will need us to go very slowly. Some literally need a picture drawn to understand. Some want to push us faster because they already “know this part.” Then there is the *storyteller*. You know — the one that has a story for each and everything you have to say. That’s okay. They’re engaged and likely learning even if they are taking you along for the ride.
Through the years I’ve noticed that engaging and educating people about Migraine is a lot like being a missionary. The more you force the issue, the less likely they will be to hear your message. The most successful are those that show love and compassion and fortitude. Those who force feed their message end up ignored or chastised.
So, how did you educate your family and friends about Migraine Disease? Share your stories here so we can all learn how you approached the situation.