Expert Answer: Educating Others About Migraine Disease

Question: I think one of the biggest problems migraine sufferers face is that often we do not look ill. For me, when I get my aura I feel just fine although I know what is coming.

Often co-workers and employees see one leave work or not come in but fail to understand what a person with migraines experiences. They see us miss work, but fail to see the times when due to an attack a migraine sufferer has to stay at the hotel while the rest of the family has fun on vacation, walks off a golf course mid-round, has to leave a nice restaurant mid meal, misses a family gathering, etc..

How far or what steps should one take in educating co-workers or employees about the facts of migraines and how it relates to each of us? In my case I own a small business but I fear I get the same stares and comments behind my back when I get a migraine. I think for the non-migraine public there is a lot of misinformation plus the stigma that migraine sufferers are somehow depressed and/or mentally ill, which at least in my case is totally not true. So is there a good way to educate coworkers/employees without seeming self-indulgent or without making it look as if one is trying to garner self-pity or something? Is educating them about migraines even suggested?

Answer: I think educating the people in your life is nearly always a good thing, but I recommend different approaches for different groups. For close family and friends with whom you already have a good, supportive relationship, I suggest you provide information about symptoms, what a migraine attack feels like, the limits attacks impose, etc. Tell them how your attacks fit the norm and where they fall outside of it. Ask them what questions they have for you. Let them know you welcome an open dialogue and need and desire their support.

For business associates I recommend being more vague. Perhaps say you have a chronic pain condition rather than using the term migraine, and only bring it up when your associates are going to be affected by your health situation. They don't need or want to know details about your situation, and by avoiding use of the term migraine you can avoid attaching some of the commonly-held stereotypes and misconceptions about migraine and other headache disorders. Developing a good working relationship in which these acquaintances trust they can rely on you is the most important thing, so I think educating people in professional relationships should take a backseat unless someone expresses an unexpected level of empathy or genuine interest in knowing more.

In dealing with employees and coworkers I think a middle of the road approach is called for. I don't think you want to give them the kind of details you'd give a close family member or friend, but I do think it is important they understand that all aspects of your life are impacted, not just your ability to be at work and be productive. For instance, what about saying, "You know Tuesday when I couldn't come into work because I had a severe migraine attack? I also missed out on my son's baseball game because I was so ill. It was hard to feel like I was letting you all down here at work and letting down my family at home. I'm glad to be back at work today and feeling a bit better." It's not that you want to elicit sympathy, but instead to reassure the people around you that you're not just playing hooky or trying to get out of doing your job.

I also recommend taking advantage of designated awareness periods, such as National Migraine Awareness Month in June, to give coworkers and employees some basic factual information about migraine disease and share with them what it's like to live with it. This allows you a natural opportunity to bring up the topic in a casual, low pressure way that won't seem quite as out of left field to your employees or coworkers.

Hopefully being moderately open with your coworkers and employees will cut back on the resentment that so often presents itself in these situations. I have dealt with that in the past, so I truly understand how difficult it can be to overcome, even when it's concerning people you've had a good rapport with in the past.

Ultimately, I think finding the appropriate level of openness for the particular group of people in your life is the key to navigating the tricky waters of a misunderstood chronic, invisible illness like migraine disease. But what do our readers think? How have you handled these issues? How did your approach work out? How would you handle these situations differently knowing what you do now? Please share your thoughts in the comments.

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