The migraineur in your life wants you to know:
Migraine is a real disease.
There is no test for Migraine.
There is no known cause.
There is no cure.
It’s not just a headache.
It’s not a mental illness.
It is possible to have a migraine attack every day.
Bright lights, loud noises, strong smells, certain foods…they really do trigger attacks.
It can take days to recover from a single attack, even once the pain is gone.
It isn’t safe to drive during a migraine attack.
All those meds are not the problem.
Meds don’t always work.
Most doctors are not trained to treat Migraine.
Emergency rooms are not always kind to Migraine patients.
There’s a shortage of qualified doctors.
There will be months, even years of trial and error.
I am sure this all seems unbelievable. What you observe appears confusing at best and frustrating in your weaker moments. I understand. I also love a few people with migraine. Despite living with this disease for over 40 years, I still have moments when I doubt my loved one’s truthfulness. Sometimes I wonder if they “did something” to trigger an attack. I get frustrated when it appears they are not taking their medicine as prescribed. Nothing irritates me more than to hear one of them complain about the pain and then tell me they haven’t done anything to try to abort the attack.
As a wife and mother to migraineurs…
These very behaviors drive me nuts. After all, haven’t they heard my lecture about treating attacks early and aggressively? Don’t they remember the lessons on sleep hygiene, trigger avoidance, keeping a migraine journal, taking medicine as prescribed, and so much more? I get frustrated because they have the opportunity to learn from an advocate any time, day or night. They are the only ones who get to wake me in the middle of the night because of a migraine attack. Not everyone gets that chance. Honestly, my irritation is more about my own ego than about their journey with migraine.
As a migraineur…
I completely understand why someone would choose to risk an attack by intentional exposure to a trigger. Forgetting to take medicine or delaying treatment also makes sense to me. It’s never about not wanting to get better. We get tired of always watching for triggers and setting alarms to take medicine two, sometimes three or four, times a day. It’s exhausting to manage this illness and it’s only made worse knowing that most people won’t believe that we are really sick. Some might understand and still not care. Sometimes we just want to live like a normal, healthy person for just a while. We know it’s an illusion, but we just need a break from being sick. So we pretend to be healthy to distract us from the never-ending hypervigilance of an incurable disease with no known cause.
Yes, we do put on a show.
At some point we may even try to push through the pain in order to participate in an important social event. Try as we might, we just can’t put on that show 24/7. Sooner or later we’re going to break. Often that is at home with our loved ones. If we can’t fall apart with you, then what other option do we have? We know that we are unreliable. This disease has made us that way. We also know that you are irritated, annoyed, and frustrated. We take it all very personally. It’s okay to feel that way – we certainly do. We just want to know that you are still on our team – that you will go to bat for us when we need it most.
We need you.
We need you to learn about this disease. Although we didn’t ask for this, it has taken control of our lives. It would just be so much easier if just one person really understood what we go through. We really want that someone to be you. Living with migraine is so lonely. Having you makes this life brighter and more hopeful. You matter to us, even when it seems like we don’t care about anyone. Please take the time to learn, to understand, and to accept migraine. It will mean the world to us if you do.