One of the biggest reasons why migraine disease, despite being the second most disabling neurological disorder has yet to be taken seriously among our peers and gain the funding for research that it rightfully deserves, is the stigma surrounding it. The negative connotations surrounding the word “migraine” are not going away unless those living with migraine take it upon themselves to clear its good name. For far too long the phrase “I have a migraine” has been equated with someone who is weak, overly emotional, playing hooky or faking it. For those of us who actually suffer from migraine, we know the opposite is actually true. As a migraine advocate, I have come to know many migraine warriors and they truly are battling an invisible enemy every day. Those living with migraine are strong, resilient and compassionate. Unfortunately, the world labels them differently because of the ugly stigma surrounding the disease. I have created a guide to help in the fight to end this stigma and hope, if followed, it can help to turn things around.
To Thine Own Self Be True
First and foremost, in order to erase the stigma surrounding migraine disease you need to be true to yourself. It took me a while to get past all of the self-stigma surrounding my diagnosis, and admittedly, I still struggle with this sometimes 20+ years later. But until you are able to be 100% accepting of what it is you are going through how can you expect the outside world to fully accept you?
Honesty Is The Best Policy
Because so many people have used our illness as an excuse in the past it has tarnished our good name, aligning it with a lame excuse or pure laziness. But we can’t let that stop us from being honest with both ourselves and with others in the future. The only way to make those around us understand the severity of the neurological disorder that is migraine is to continue to be honest and straightforward as to what we are going through and how we are feeling.
Make It Personal
It can be hard to share your story with migraine and be vulnerable for fear of being looked at differently or for fear of judgment, whether by peers or in the workplace. However, if we share our personal stories with those around us, we can educate and show them how this disease affects their neighbor, their family member, their co-worker, their friend. The best way to get someone else to understand is to share your personal story.
Knowledge Is Power
The first rule after getting diagnosed with migraine disease is usually to educate yourself with all of the facts so that you can best advocate for yourself. When working to erase stigma, it is now important to educate others. In addition to sharing personal stories, it is good to be armored with the facts. Most people have no clue how many people are affected by migraine and how damaging it truly is. They think it’s just a headache. Explain to them why it’s not.
Go From Being Invisible To Visible
“You look fine.” Nothing is more upsetting than having someone tell you this when you have a migraine. Since migraine is an invisible illness it can be hard for people to understand your pain when they can’t necessarily see it. We need to make them see it. We need to do our best to use our voices and social media accounts as tools to make noise and bring migraine to the forefront. Prove to the world it’s not all in our heads and make them see what migraine disease is and who it affects.
Do you have a ton of doctor appointments? Of course, you do. Do you go alone? Try bringing a family member or a friend next time. You could probably use an extra set of ears anyway. Even if they stay in the waiting room, it can be nice to have the company while you wait. They get to see what you go through constantly, and it becomes an experience you’ve shared. Do you volunteer or do any advocating on migraine’s behalf? Ask your co-workers to join a fundraiser with you. Have your family attend a caretaker education day. Involve those around you. You may be surprised how you all benefit from the experiences you share
With the month of June designated as Migraine And Headache Awareness Month, the migraine community is already making huge strides toward erasing stigma, however, our work is nowhere near done. For example, I recently encountered a doctor who told me she could not help me because I had too many issues. We are warriors and every day is a battle. Every uneducated person we encounter is just another opportunity and though it may seem like another daunting task on top of everything else we have on our plates, together this migraine community has already advanced further than ever before. I am hopeful that the work each of us is doing is making a difference. There was a migraine segment on Good Morning America recently that highlighted personal stories mixed with scientific facts from expert doctors and events like the Migraine Summit and Retreat Migraine are only gaining traction. I look forward to the day we have erased every last stink of stigma. Until then I hope this guide helps.
by Stacy Herman