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 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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (18)
  • Penni Friess
    7 years ago

    I’m to the point of filing disability at work…and I’ve given up on some family members ever understanding, even my daughter at times…it’s frustrating and at time we all feel so alone!

  • Rachel Z
    7 years ago

    In a follow on to my earlier post, I would like to reply to Mieko. I do think we one should assess the situation in a workplace or other environment before revealing too much information. You mention you gave a 1/2 hour presentation. I just distributed a 1 page fact sheet printed off a medical website. I have a friend, on the other hand, who once witnessed me having a hemiplegic aura and obviously couldn’t handle it. When I’ve tried talking to her she acts like I’m not tough enough to handle life. I don’t judge her because she’s had unusual life experiences which have led her to have this sort of attitude, and she’s a fabulous and dependable friend in other ways. But I don’t talk to her about my migraines anymore, and avoid her when they are too bad to hide

  • Rachel Z
    7 years ago

    i think education is key. Since I have migraines almost every day and most preventatives and abortives don’t actually work for me, I’ve had to learn to function despite the pain. So when I worked (now I’m home with 2 little kids) I came in most every day and just found ways to cope — sometimes taking breaks and lying down upstairs, other times closing my eyes and doing meditation or biofeedback for a few minutes. But after a particularly debilitating period when I was less that pleasant to my co-workers, I decided to distribute some information for a migraine website on the disorder and what it was about. One woman, who 8 years later is still a friend, thanked me for the information and revealed that before she had read it she though I was probably crazy and needed to see a psychiatrist more so than a neurologist. Misunderstanding and even discrimination run that deep. Recently a GP who is an acquaintance of mine, an obviously not well versed in migraines, was over for my daughter’s 2nd birthday, when I had a full blown hemiplegic aura complete with seizure like external symptoms. A friend who was there later told me that this GP, an MD after all, told her husband about the “stunt” I pulled at my kids’ birthday party.

  • Ellen Schnakenberg
    7 years ago

    I base my decisions whether or not to share my situation individually. I am often asked why I wear sunglasses indoors, and this is an opportunity to tell a stranger the answer. For strangers, it’s a quick sentence. If they look like they want to know more, then I continue, taking their nonverbal cues when they are either interested or have heard enough. Most people really aren’t that interested, and it’s not actually that important for them to know my life story, lol. Friends and family have known for years about my Migraine attacks. Many still don’t understand. It took a lot of years for me to figure out that is okay too. Time is on my side – it really is. Most people who see Migraine attack after attack after attack eventually “get” it. That said, I have a passion for wanting the world to be a better place for those of us who suffer Migraine. This is why I am here at Migraine.com and spend so much time educating and advocating for patients. Helping to eliminate stigma and stereotypes and getting appropriate information out there is my way of fighting the Migraine Beastie.

  • Jan Lyn Lewis
    7 years ago

    I am so sorry to hear that. I wear hydration glasses 24/7 practically now for sjogrens dry eye and the fact that light triggers headaches. I say treat yourself, get a few pair and remember you are unique and loved and smile back at them.

  • Sherri Franklin
    7 years ago

    People look at me strange everytime i wear sunglasses indoors.

  • Mieko
    7 years ago

    I think education is definitely the key however it can certainly be difficult. I have suffered from Migraine for 12 years and have had an official diagnosis for just as long (I have suffered with Epilepsy all my life). However, within the workplace I hid my illnesses until it became clear I could no longer hide them. Migraine came to the forefront while working in the federal government for the Dept. of Health and Human Services four years ago when a complaint was made regarding my keeping my work area darkened. Backed into a corner and feeling exposed I spoke with my supervisor regarding my migraines which opened a floodgate; it did not matter that I was sick, no one seemed to understand within the division of HHS I worked what Migraine was, which I found deplorable nor did they care. Therefore, I decided to educate them threw an hour and a half long presentation that took 6 months of extensive research and preparing. In the end, I felt the presentation did far more harm than good as my illnesses and all of their difficulties, something that was not my fault, was later used in an attempt to ultimately dismiss me from my job.

  • Maureen Baxter Douglas
    8 years ago

    My problem is more that I am a w/drugs functioning migrainer. The people in my life are starting to see how much they affect me because I am becoming more open In the last year I spend over half of every month with a migraine. I don’t even care what anyone thinks anymore now that I have learned that I am not crazy. This pain is real and it is something others have too. Before migraine.com I really did not talk to many about this. Now I share information with everyone that will listen. Not just about me but just the whole thing. I have shared the site with several people. My husband wants me to go on disability and that will make it difficult to share with everyone because I won’t be around as many people but I also cannot keep taking the imitrex like I am.

  • Vicki Gewe
    8 years ago

    I’m always very open about my migraines with everyone I meet. After all, what is the 1st question people usually ask ones they are meeting? What do you do? Since I’m in too much pain to work (but haven’t paid enough into social security to qualify for disability), it’s easy to talk about my migraines. I hear so many people worry about letting others know about their pain, and you can’t TRULY get anything until you experience it for yourself, but I’ve found that just about everyone has real empathy and struggle to understand what I suffer.

  • Cathy Ashenfelter Christensen
    8 years ago

    I’ve read you can qualify for SSD even if you’ve never worked. I do hope you look into it.

  • Paula DeWitt
    8 years ago

    As a Migraine sufferer, I, too have had people that didn’t believe that I was sick… UNTIL they saw that I couldn’t get out of bed! They had to actually see me in a full blown attack to see how bad off I was. Mine often put me down from 2 to 4 days. PLEASE, NO LIGHTS, NO NOISE, NO HEAT AND DO NOT TOUCH ME! I want to just crawl under my pillow and disappear when Migraines hit. I use ice packs and cold wet rags and EAR PLUGS to try to rest.- People that don’t truly suffer from migraines and SAY they do just make me ill! I know some people that claim they have migraines but you NEVER see any effects… they continue to function as normal.. no sensitivities to anything….. how can they say that it IS a migraine? – -I have so many people telling me that it’s all in my head too. REALLY, FOLKS? Then I would gladly let you see how bad the pain is! (Actually, I wish no body suffered from these but those that act as if I am faking make me so angry at times!) – – Mine were passed down from my Dad’s side of the family. All 3 of his children suffer these but mine are the worst because mine are also menstrual related. So, I have them MUCH more often than my brothers do. And, yes, I am glad that they don’t have as many as I do. BUT… it really upsets me (to tears every time I am under attack) that I cannot function as a mother and wife. Our son is 11 and he usually is home alone with me when I have migraines but he does his best to take care of mommy. He keeps my rags cold and wet and tries to make ice packs to help me out. Daddy works and is often gone for 2 to 3 days at a time but we manage!- – To all that suffer Migraines, I FEEL FOR YOU—- and I have one today.

  • Karen Marlowe
    8 years ago

    I used to worry about what people thought. I have missed many days of work and many family functions. But, I have worked at the same place for over 20 years so they know I am not faking… They’ve seen me in the throes of a full blown attack. As far as my family goes? Most of them are pretty good about it, but, well, if they don’t understand, that’s just a family thing… Do they really ever understand us?

  • Karen Marlowe
    8 years ago

    Thank you, Jim. 🙂

  • Jim Marlowe
    8 years ago

    I understand

  • Christine Nordstrom
    8 years ago

    I also wanted to add that my co-workers could tell almost instantly whenever I did go to work with a migraine, that I had one. I can’t hide it, or fake it. my eyes are a dead give away and they were very compassionate and understanding, (just not management!)

  • Christine Nordstrom
    8 years ago

    that’s so true, Chasity! I am bi-polar also and people tend to just say well just get over your headache. I’ve had people where I use to work tell me to drink water. good Lord, I wish it were that simple! I ended up losing my job because of missing so much work due to my migraines but thankfully I was approved for disability so I no longer have to be in panic mode when I have a 4 day migraine and can lay in bed without having to worry about calling in sick when I can’t even speak when I have a migraine. I can’t drive, I can’t talk, I can’t walk, I can’t do anything with a migraine. they’re completely debilitating, yet nobody in management where I worked understood, or even attempted to understand what I was going thru. and I had been there for 11 years and they were sort of seasonal in a way. it was sort of hurtful to be let go but on the other hand, I would have not gotten on disability had it not happened. blessing in disguise I guess! although I would love to not suffer from migraines. I would do anything not to.

  • Chasity Spradley
    8 years ago

    The comment on being mentally ill/ depressed hit home 4 me. I feel the same way as though others don’t understand… But I am also bi-polar…. Which adds a hell of alt of stigma to my person. I do wish for more understanding…. I get most of utter here on my migraine forum…..as others tend 2 get tired of even hearing u…as if the disease is not even there… Or perhaps they think I should ignore it?

  • Nickye Granderson Bates
    8 years ago

    i did not know that there was a link between bipolar and migraines….

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