Dear Migraine advocates,
Today’s prompt inspired me to share a message with migraine advocates and aspiring advocates. It’s a message about what it really takes to inspire hope in others. That’s part of the job description, right? We’re supposed to be beacons of hope, inspiration, and knowledge for other patients. We do get to raise a little hell from time to time, but most of the job is about helping other patients.
This is a lesson I’ve had to learn and relearn — and I don’t have an excuse. I’ve been trained to be a patient, empathetic listener, yet even I forget this lesson sometimes. Because I’m just as guilty as any other advocate, the rest of you get a break. I won’t assume you know that helping others have hope requires building trust. Instead, consider this your introduction into some of the most challenging (and rewarding) work you will ever do as an advocate.
Creating hope is hard
Helping others feel hopeful can be difficult. That is especially true if they think you do not understand their experiences or what they are facing. Sometimes it’s easy to forget that although we share the common experience of migraine, we each have unique lives. No two of us have the same histories. Even our experiences with migraine are unique.
Many of us can tell stories about doctors, bosses, or loved ones who didn’t believe us or accused us of faking it. That experience is called invalidation. In order to develop trust in someone, we need to be confident that they believe our description of our own experiences. That happens when someone validates us by sending messages indicating they believe our story and think our response is a reasonable one. Many of us know what both invalidation and validation feel like.
It’s almost impossible sometimes
Unfortunately, some people have no idea what it is like to feel validated. It can be easy to dismiss these migraineurs as “not wanting to help themselves”. The truth is rarely that simple. In some cases, these migraineurs have spent a lifetime on the receiving end of invalidating messages. Their entire lives (including migraine) feel like a walking nightmare from which they can never escape. Everyone they have encountered refuses to validate their version of their own life experiences. So they’ve learned to expect the worst and have difficulty believing life will ever get any better. They don’t have the physical or emotional tools to help themselves even if they wanted to.
It’s easy to pass by these migraineurs by telling ourselves they “need help” (implying mental health treatment). While that may or may not be true, we all know the stigma attached to migraine. The last thing any of us wants to do is talk to a therapist. The mental health discipline is guilty of many sins against the migraine community. Many of us have been labeled “crazy” or been told we “have issues to work through.” So imagine how that might feel if you had migraine AND really did need counseling unrelated to migraine.
Sometimes fear is stronger
You might live your life in a permanent state of “fight or flight,” feeling helpless to ever change your circumstances. Feeling scared and alone, desperate for even a glimmer of hope, praying fervently for a rescuer, you would reach out for any help you could get. You might hold too tightly, scaring off potential help. This would only reinforce your belief that no one could or would ever help you. You might even alienate migraine advocates who say they want to help. That’s called Learned Helplessness and it’s very difficult to change, even with years of excellent therapy.
Imagine how lonely that must feel.
Protest #1 – I’m not a shrink.
I can hear your arguement, “But I’m not equipped to deal with mental health issues!”
No, you’re probably not. I’m not asking you to become a therapist. You don’t have to be a counselor or psychologist to learn to how to be a better migraine friend, though. It starts with learning how to listen differently.
Listen to learn
Most of us listen to find an opening to make our point. That’s natural. It also makes it more difficult to build trust. That requires listening to learn. Some people are born “good listeners.” The rest of us have to be trained. Here are some tips to help you get started:
- Forget everything you know about life with migraine (or life in general)
- Put aside all value judgments.
- Listen with the goal of learning what it’s like to live that person’s life.
- Ask lots of questions that help you improve your understanding.
- Clarify your understanding by asking more questions.
- Keep listening and asking questions until two things happen:
- You begin to feel empathy for that person.
- He or she confirms you really do understand what their life is like.
Until you have developed a full understanding and appreciation for someone’s circumstances and choices, you may have a hard time getting them to trust you, let alone inspire hope in them. We want others to put themselves in our situation before criticizing us. Helping others build hope requires us to do the same.
Protest #2 – I don’t have time.
Now you argue, “No one’s got time for that!”
If you don’t have time to develop at least one relationship like this, then maybe you should reconsider being an advocate.
“Well, now that’s a bit harsh,” you defend.
Yes, it is. I’ve said it to myself a thousand times, so you can read it once. I’m not asking anything of you that I don’t expect of myself. Don’t try to save the world — just be a good friend to one migraineur who’s having a tough go of it.
We’re bleeding hearts,
Advocates are educators and helpers by nature. We attract people looking for answers. Some of those people are harder to love. Some have comorbid mental illnesses. Some will take years before they trust us enough to learn to what we have to teach.
…a little wounded,
There’s so much misinformation and stigma that we’re all a little scarred by it. None of us start our journey with an open mind, ready to believe everything we hear. We all come with our own personal baggage. Some have a backpack full of it. Others have a rail car in tow.
…and slow to learn, too.
Another advocate once told me, “Migraineurs need to be spoon-fed.” It’s true that we often need to absorb small bits of information in phases. There’s a lot to learn and it can take time to fully grasp it all.
It took me over FOUR years to actually put my favorite advocate’s advice into action. That’s just because I’m a stubborn, bull-headed, know-it-all. Imagine how much longer it would have taken if I had trust issues, lack of support at home, extreme poverty, or a serious mental illness.
We all need to be reminded to be patient with the newcomers. If we are not willing to befriend migraineurs with emotional and/or relationship problems or mental illness then we are guilty of the very stigma we say we are trying to eliminate.
Consultation and referrals
Knowing when to ask for help is important. When helping others by being a good friend, you might feel overwhelmed. If that happens, you have an open invitation to contact me. Sometimes being a good friend means helping that friend get extra support. Feel free to send people my way who might need a little extra TLC, too. That’s much preferable to having them leave, believing that we don’t care.
The Migraine and Headache Awareness Month Blog Challenge
is organized by the American Headache and Migraine Association.
#MHAM, #MHAMBC, #migraine, #clusterheadache, #chronicmigraine