Active engagement

The theme for this year’s Migraine and Headache Awareness Month is:

Rule your headache disorder: Be actively engaged in treatment.

So what does it mean to be “actively engaged”?

Just a few days ago, I ran across a tweet stating that our medical systems are not set up for active patient engagement. I can agree, to a point. There are pockets of health care providers who encourage patient participation in their own care. Then there are clinics and providers who run patients through like cattle, never stopping to think if they are truly providing the kind of service patients need. Health care systems will only change when patients demand it. Being actively engaged in your own treatment is essential to facilitate change.

Challenge the status quo.

Part of active engagement is to openly challenge these outdated systems. If they will not change, it then falls to patients to reject such systems. If we refuse to participate in health care systems that treat us like numbers, those dinosaurs will become extinct.

Go where you need to go.

Actively engaged patients go where the good doctors are. If you have migraine or another headache disorder and not getting good results working with your current doctor, it may be time to move on. Because very few doctors are truly experts in headache medicine, you will probably have to travel in order to see a doctor who can really help. Accepting this reality is a critical aspect of good migraine management.

Take responsibility.

Another aspect of active engagement is to assume joint responsibility with your doctor for treatment outcomes. After all, it is a rare problem that can be solved by pill or procedure alone. Nowhere is this more relevant than with pain conditions like Migraine or other headache disorders. My headache doctor tells every patient, “I can help with medications, but they will only take you so far. The rest is up to you.” That’s the intro line to his “migraine speech” given to every new migraine patient. He follows that up with education on trigger identification and avoidance, lifestyle management, and treatment compliance. I wish every doctor who treats migraine patients would give this same speech!

Educate yourself.

But they don’t. I talk to people every day who have suffered for decades and still don’t know the basics of managing migraine. That brings me to another part of active engagement…education. If you or someone you love had migraine, it is your job to get educated. You can’t just rely on what the doctor tells you about this condition because most doctors only get about 4 hours of training on headache disorders. They don’t know enough to teach you all you need to know.

Choose your sources carefully.

Because there is so much bad information out there, you need weed out the junk. Being actively engaged means ignoring all the hype and false promises. If it doesn’t come from the American Headache Society, the National Headache Foundation, or the International Headache Society or one of their many sister organizations, then be skeptical. Good decisions are based on good information.

Change the system.

By being actively engaged in your own headache treatment, you can be part of changing the way our health care systems treat patients living with headache disorders. If we reject their current treatment practices, they will change. Insist on good quality care. Refuse to invest your time and money in systems that don’t know what they are doing and can’t really help you. Accept headache treatment only from doctors who actually know more than you do about headache medicine.

For some of us, that’s a very tall order.