Part II Ask the Experts: Awareness

For Migraine Awareness Month we reached out to our contributors (experts) and asked them a series of questions. In Part II of this series, we asked, “What do you wish people understood more about migraine?”

Anna

“I wish that my acquaintances and colleagues understood that there is a wide spectrum of disability among people who experience migraine attacks. Most people who have experienced a migraine, or who are close to someone who lives with migraine, know that they can be severely disabling beyond the symptom of head pain. They tend to know about the exhaustion, nausea, and sensitivity to light and sound as well. But they often don’t know that some people experience a range of these symptoms every day. I wish that there was a better awareness of how chronic, or even just frequent migraine can derail our plans in ways that are truly life-changing. When the general public starts to think about migraine as a spectrum, perhaps it will become easier to communicate our needs, and receive appropriate support and accommodations for a disease that affects every corner of our life.”

Katie

“Only a handful of people seems to really understand the pain I’m in. For those who try to be empathetic, I appreciate it. I want people to realize that even during a normal conversation, I am in constant pain. And the severity could change in seconds.

During the same five-minute dialogue, I could go from a level four pain (more annoying than anything) to a six or seven- completely fatigued and closing in on becoming non-sensical. I only have a short period of time before I can’t make any coherent decisions.

There are cues that I’m quickly deteriorating. Melty face, aphasia, exhaustion, trouble breathing, pale face, dead eyes and can’t focus. It’s called an invisible illness, but there are physically noticeable changes.

It’s frustrating, it’s confusing and it’s taken me years to politely exit a conversation without everyone making a fuss over me or telling me that they have the perfect solution for me to get over it. I wish that everyone knew for even a few minutes what it’s like to have such a debilitating disease.”

Lisa

“I wish that more people understood migraine to be a disease rather than something that people can “get”. When I talk about migraine, I often get the response, “Oh, my brother/boss/wife/etc gets those too!” It feels like someone is describing getting a cold or a flu.

I also wish more people understood that it’s actually a complex neurological disease. Once a student of mine mentioned giving to a Parkinson’s charity in honor of a family member and I said I’d recently given to a headache charity. She laughed, because the word “headache” is not associated with a valid medical condition as much as it is with something bothersome or troubling. I explained the severity of my migraine symptoms and she then empathized. I’ve known people with migraine and chronic headache who have committed suicide or died of accidental overdose. Migraine and headache are not laughing matters.”

Sarah

“Migraine disease is still understood by many as simply a bad headache. I believe this is often because, even when we specify that migraine is a neurological disease, it is constantly lumped together with “headache”—both in large-scale awareness campaigns and migraine-specific conferences and science papers. I’d really love if more people fully understood that headache is only one symptom of migraine disease, a symptom that doesn’t always occur with each attack. Many of us have other disabling symptoms, like vertigo and cognitive dysfunction, that more often characterize our attacks. Unfortunately, I think that as long as we continue to talk about migraine as a headache disorder this misunderstanding will persist.”

Holly

“I wish the general public better understood the prevalence of migraines (that over 36 million people in America alone have migraine). The statistics are staggering and more funding, research, and migraine specialists are desperately needed. I wish there was a more universal understanding that migraine is not a bad headache but an extremely incapacitating combination of complex neurological symptoms.

I wish my family members, while the most understanding and loving people in the world, could experience, for two minutes, what a migraine feels like. I think only when people have “been there” can they truly empathize with us.”

Elizabeth

“What I wish people in general understood more, even within our own community, is something which even we as experts had to recently discuss at our conference in March. In fact, it is reflected in this very question!

As a community of experts at migraine.com, we are beginning to use the phrasing “migraine disease” rather than “having migraines.” The difference is that we are afflicted all the time, even between attacks, and always have “migraine.” The article Katie Golden referred to when she prompted our very helpful conversation is here.

I realize that requesting that everyone change their wording may seem nitpicky. However, the idea that migraine disease is an inherited neurological syndrome, on a spectrum ranging from light episodic to chronic daily (attacks every day) or intractable (pain never ends) is a concept that I think could really help reduce stigma. Migraine disease is similar to epilepsy or Parkinson’s Disease in that it has no cure, and never goes away, rather than the common perception that persons with migraine allow themselves to ‘get too stressed’ or ‘fail to avoid triggers‘ which would then lead to an attack which presumably we could have avoided.

Personally, in my involvement with my CGRP clinical trials, the headache pain portion of migraine disease was significantly relieved both times. However, either the other symptoms increased or I simply noticed them more, leaving me feeling fatigued and nauseous with depression, anxiety, and allodynia almost all the time, with periodic tinnitus and autonomic facial symptoms (red and swollen nose) and other aura. Despite the relief of my pain I am still afflicted with migraine disease.

Words matter!”

Comments

View Comments (4)
  • Vicki Sartin
    2 years ago

    I am a pharmacist who has been disabled by chronic migraine for 7 years. Even as a medical professional, I was surrounded by coworkers that treated me as if I could control this debilitating disorder to only occur when I wasn’t working, or that I could predict today if I might be unable to work for the next hour, day, or week. I was informed that my excuse for being unable to work was inconvenient. It is sadly surprising how uninformed the medical community is concerning chronic migraine. I live alone and I cannot fathom why my family, who knows that I am incompasitated by migraine, could say that they are shocked that I can no longer keep the house and yard up or that “you would just die if this relative or that were to come to visit.” To this I have to remind them that I am disabled. I have migraine symptoms mostly every day. I had a hysterectomy to rid myself of menstral migraine. I am willing to do anything to rid myself of the miserable array of symptoms. I have visual disturbances, cognitive impairment, severe sleep disturbance (lack of sufficient R.E.M. cycles caused by inability to acquire deep sleep), severe head and neck pain, exhaustion, extreme sensitivity to light and smell, nausea, sensitivity to certain sounds, and fibromyalgia type pain and weakness. If I look like I just ran a marathon, am red as a beet, cannot carry my side of a conversation due to inability to remember what I was saying, (stroke like inability to find the word that I would like to use), or I am having trouble walking a straight line, I am probably in the throws of a severe migraine. I have a couple of people in my life that do my errands, make me leave the house at least once a week, and understand why I cannot do everything that I once was able. Unfortunately, my friends have decreased due to my inability to keep appointments. I live moment by moment and very few people can grasp my inability to plan a lunch date or attend social gatherings. The isolation of this neurological disorder could be so much less if a better awareness was possible. I hold out hope for my family and friends to understand that my disability isn’t just my inability to perform my profession, but my inability to perform normal activities of daily living. I also hope that this has helped a sufferer of this life altering disability to not feel alone. We are many, and together we can help one another to understand what migraine entails, and that we need not feel overwhelmed. Take life moment by moment and quit stacking guilt and shame upon ourselves. Forgive yourselves. Find happiness where you may. Keep hoping that awareness is possible.

  • Joanna Bodner moderator
    2 years ago

    Hi there Vicki Sartin,
    Wow, what a heart-felt and supportive comment to share with the community. Thank you for your willingness to reveal what a difficult & painful journey it has been for you and how much living with chronic migraine has impacted your life. You provide such a wonderful and important perspective. Especially your point to…”quit stacking guilt and shame upon ourselves”. Powerful words and for so many a very difficult thing to be able to do. Thanks so much for being part of our community and especially for helping to let others they are not alone in this! Warmly, Joanna (Migraine.com Team)

  • Lori
    2 years ago

    Words indeed DO matter. How can we hope to understand one another if we aren’t precise in our language? We should also use migraine “I’m having a migraine attack.” rather than “I’m having a migraine.” Small difference, but it lends credence to the chronic nature of our disease, much like we would talk about an “asthma attack.” Everyone knows this is referring to an acute episode of an illness that never goes away. In between “attacks” we still have the disease. Kudos to the Editorial Team – well-written piece. Keep educating us!

  • Elizabeth Roberts-Zibbel moderator
    2 years ago

    Hi Lori! Thanks very much for your thoughtful comment. I agree and have been trying myself to use “migraine attack” instead of “migraine” over the past several months. We’re glad you are here! Best Wishes, elizabeth

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