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Corporate looking person with a brain for a head is giving a presentation bhind a podium regarding migraines.

Stigma for an Invisible Disease

Let me start out by saying that stigma is horrible. Why should people who suffer from invisible diseases feel guilt or shame for having them? I’ve had migraine for years. It started out as episodic migraine where I would have two to four attacks per month. That doesn’t sound terrible, but when it removes you from being productive at work or worse removes you from work that’s where I noticed the stigma really starting.

I was in denial about my migraine attacks

I knew I was having migraines. My doctor was having me track my attacks because she was pretty sure I was having migraines too. The problem was that I was in denial. I didn’t want to believe that that’s what I had. I was inadvertently fueling the stigma I’ve become to dislike so much! My co-workers saw the change in my work performance. I used to be able to juggle several things at once and never drop the ball. They would kid with me saying I was a machine. Migraine changed all that, and for some reason, I was ashamed and felt afraid to tell anyone what I was going through.

Silence perpetuates stigma

Our silence only helps perpetuate stigma. My boss had always been very stern and he demanded high performance, but he noticed a change in me. It took me a few weeks before I sat down with him to discuss my illness. I don’t think it would have taken me that long if I had visible signs of migraine that were acceptable. I had hand and shoulder surgeries that affected my performance, but there were clearly visible attributes that somehow made them ok to disclose openly.

I met with my boss and much to my surprise I was met with empathy and as much understanding as he could give me. I was still learning about migraine at the time, but I gave him all the details and information I had. It strengthened our relationship. I was also surprised that he did research and helped get me set up to utilize intermittent FMLA leave to help excuse my absences. It wasn’t that easy to tear down stigmas with my fellow supervisors. Many of them after hearing about my disease still thought I was just trying to take some extra time off or I was looking for a way to shirk my responsibilities. It was frustrating to say the least.

Education and support are key

Over time I became more educated about the disease that was slowly and insidiously taking over my life. I started reading BLOGs and watching videos that dealt with migraine. This started to give me the encouragement I needed to speak up and speak out about my migraine. I started telling everyone at work so they would know why I struggled some days and was missing work. I told family and friends what was happening and why I was missing out on family gatherings and such. There is still stigma surrounding migraine in my life and I’m sure you see it in yours as well. My advice is to come to terms with your migraine. Be kind to yourself. Let others into your world. You may find yourself pleasantly surprised at what you experience. It’s all part of erasing the stigma of migraine and developing a strong support system you can rely upon.

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

  • deedeevee1
    1 month ago

    I’ve told them. We’ve discussed it. But they still don’t get it. Sadly, unless you get them you don’t fully get it. I’m glad that nobody in my family suffers through this torture that is chronic migraine disease. But if they don’t get them, then they just don’t get it. Sad but true.

  • Tom Picerno moderator author
    4 weeks ago

    @deedeevee1 it is very unfortunate that people usually don’t get what we go through especially if they don’t have a valid point of reference. I find that to be one of the most frustrating parts of this disease. That’s why I’m glad we have this site so that we can air our frustrations out among those who truly get it. Tom( migraine.com team)

  • Derek
    1 month ago

    See, I’ve come around to a different way of thinking about this. I actually do wish people that are ignorant to me about my illness or are dismissive of it would get one attack. Just the one, because that would be enough to have their eyes opened to what we go through, and why their remarks, or inability to accept are so hurtful.

  • Tom Picerno moderator author
    4 weeks ago

    @Derek one of the most frustrating things about this disease is trying to explain what we go through to someone who has never had a migraine. We are often met with skepticism or disbelief that we are actually experiencing an attack as we describe it in an effort to educate those around us. That is hurtful for sure. It does make you wish the disbelievers could experience what we go through just once so they could relate though. Tom (migraine.com team)

  • bibliobiker
    1 month ago

    I teach English but take a moment in the semester to educate my students about migraine disease. (It’s easy to do if I use an informative essay as a backdrop.) I’ve found that even students who have migraines are not fully aware that migraine is “not just a headache.” Educating my students is part of my plan to inform the public and help remove the stigma of this disease. (I even tell my students to be patient if they hear me–an English teacher!–struggle with words, because that’s an indication of my disorder.) It’s good to know I’ve sent many knowledgeable students into the world who can let others know about migraine disorder so we can begin erasing the myths and stigma.

  • Tom Picerno moderator author
    1 month ago

    @bibliobiker thank you so much for taking an active role in migraine awareness! It is such an awesome use of your time and resources. I’m glad the school allows you to take a block of time to devote to this horrible disease. I believe awareness and education are huge steps to eliminating the stigma that surrounds invisible diseases like migraine. Thank you for sharing your story with us and for posting in our community. Tom(migraine.com team)

  • drmaryb
    2 months ago

    I have found that many people are very supportive but occasionally someone unintentionally says something that hurts. For example, when I had to reschedule an appointment, a client asked for clarification, “Were you sick or did you have a migraine?” I simply looked at them with raised eyebrow and they got it, “Oh, the migraine made you sick.”

    Once recently, when I mentioned my migraines (I was seeking family history for the disease), a relative who didn’t know me well commented that migraines occurred in over-achieving white women – and that I was one! I don’t think she had a clue that this remark was offensive. And oddly, the relative was also a white woman who had achieved as much or more than me.

    While such comments obviously don’t feel good, I try to be patient as I know that I have failed to understand other people’s illnesses. It is especially difficult when an illness has odd or variable symptoms, cannot be measured and has no clear cause.

    As a psychologist, I’m often called upon to sort out the psychological factors in such conditions and this is often not easy. I do not want to label something as “psychological” simply because a physician cannot explain it. On the other hand, I do not want to fail to help someone if they are suffering emotionally and have defenses that keep them from seeing this.

    Thank you for this helpful post.

  • Tom Picerno moderator author
    1 month ago

    @drmaryb thank you for taking the time to post your experiences with migraine. It’s nice to hear that you play an active role in migraine awareness. I’m glad the article resonated with you and that you found it helpful. Having an invisible disease is hard enough, but having to endure the stigma only adds to the problem. Thank you for being there to help educate others from your professional platform. Tom (migraine.com team)

  • Crystal.Harper
    1 month ago

    I’m so glad this post resonated with you and I completely agree that most of the time people have good intentions with what they say. All we can do is try to spread awareness and educate others about the condition so they know the difference between a comment that may be offensive and one that’s acceptable. Thank you for sharing your thoughts!

    Best,
    Crystal

  • Crystal.Harper
    2 months ago

    I absolutely love your post. I think it’s so important to be open about what we’re going through not only to shed light on it to others, but also to lift the burden off of ourselves. And I really like the advice you threw in at the end. Thanks for sharing!

  • Tom Picerno moderator author
    1 month ago

    @Crystal.Harper Thanks for the kind words! Stigma is so hard to shake off an invisible illness. I’ll be the first to admit that being open about the disease is not easy. While some are understanding there always seems to be a majority who are less than kind. Either way, I am a big advocate of education for migraine disease with the hope that it will bring true understanding and empathy. Tom(migraine.com team)

  • Nikita212
    2 months ago

    I’ve found I need to be careful who I talk to about the migraines. Some are so understanding about my condition, I’m extremely grateful. Most are not. They get annoyed when I tell them I can’t do something. Basically, it’s a juggling act in more ways than one.

  • Crystal.Harper
    1 month ago

    Unfortunately, it’s so difficult for people to understand anything that they don’t have first hand experience with and that’s especially true with such a complicated condition like migraine. It’s sounds like you’ve found at least a small circle of people who do get it though and through this online community, there are thousands more! We’re always here for you!

    Best,
    Crystal

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