Is migraine disability real? The need for awareness.

My recent experience with migraine disability

The worsening nature of my migraines eventually led to me seeking a migraine disability.  A few weeks ago, when I got our daily mail, there was a decision letter from the insurance company communicating their denial of my claim. The reason for denial and I quote from the denial letter: “….lack of abnormal physical exam findings that demonstrate your inability to perform sedentary job duties.”

For a little context, I was serving in an executive leadership role at the company when I went on leave. One of many executive leadership jobs that I held throughout my 20-year-long career. My most recent job duties, as I clearly outlined them in my claim documents to the insurance company, had nothing to do with sitting on the couch. My duties had everything to do with critical decision-making, people management, customer acquisition, training, traveling, managing multimillion-dollar budgets, and being accountable for the sales and marketing results for the entire company – just to name a few.

When I truly needed the short-term disability benefit for the first time in 35 years of my battle with this debilitating disease, I was essentially told by the insurance company that as long as I can sit, I can do it.

There is no migraine disability as they saw it. It was disheartening, to say the least. Not only is there a stigma in the school and workplaces toward this disease, but the very places that are supposed to provide support in the most challenging time, deny your right to help.

My case had a long-documented history of diagnosed chronic migraines that were worsening. The denial felt bigger than just an insurance case review decision. The hardest part about living with migraines is the stigma associated with it and the invisible nature of the disease. 

This situation raised the proverbial “Why are things like this?” question in my mind. I was filled with a sense of injustice. As I dealt with preparing an appeal for my denied claim, I also started researching migraine disability in depth. I wanted to see any publicly available data on this issue and to find out how one can help shift the sheer lack of awareness and understanding of this disease.  

Is migraine really that disabling?

The simple answer is absolutely! Migraines are a leading cause of disability worldwide. In 2017, Eli Lilly sponsored a survey that was then published in the Migraine Impact Report.^1,2 The report examined the economic, physical, and social impact of migraines. There were a total of 1018 US adult respondents. 518 were medically diagnosed with migraine, 200 respondents knew a person who experienced migraines, and 300 members of the community did not know anyone with migraines. One of the biggest validating data points for me, when reading this report, was the graph below.

Respondents who had given birth and also experienced migraines had to rank the pain of their worst migraine in comparison to childbirth pain. 

To top it off, survey participants with medically diagnosed migraines ranked their worst migraine pain (8.6) higher than pain associated with broken bones (7.0) and kidney stones (8.3).

But the story of our silent suffering is really in these two simple findings from the survey:

• 91% of people with migraines reported that people without migraines are not fully aware of the disease’s severity.
• 62% also reported masking the full impact of their migraines when at school or work.

Little societal awareness about this disease coupled with a pretty strong stigma has also produced much worry in my life.

For 20 years of my corporate career, I had an ongoing concern about how others will perceive my performance and if migraines will put my job in jeopardy. This survey made me feel somewhat relieved to know I am not alone in this. It confirmed that those with migraine demonstrated a variety of concerns with the effect of the condition on their lives. Here are just some examples²:

• 54%: “I worry that people think I’m lazy because of the impact migraines have on my life and ability to perform tasks.”
• 40%: “I have been told to ‘get over it’ when I am experiencing a migraine attack.”
• 29%: “I sometimes feel like my job is in jeopardy because of migraines.”
• 28%: “I have been made fun of for having migraines.”

I once was in the room when several co-workers were talking about someone we all worked with who had migraines. They were saying he is just an alcoholic who can’t admit that his drinking problem is causing his morning hangover. If they knew that roughly 50% of migraines happen in the early hours of 4am to 9am, they might have thought twice before labeling this person as an alcoholic.

The silent nature of suffering from migraines 

When I asked my middle school teacher to go home during intense migraine attacks, she called my parents to tell them that I was making up headaches. No amount of explanation by my mother, who was and still is my most avid supporter, helped the situation. “But she looks the same,” exclaimed my teacher, “How do you know she is telling the truth and not just trying to get out of school.” My mother would calmly state that my grade point average has been 4.0 since the beginning of 1^st grade and that I was under the care of a neurologist for this condition. The likelihood of me making this up was non-existent.

But visually it is hard to tell unless you know what to look for in the migraine patient. Like a tense expression on their face suggesting every sound and movement made them hurt more. Like rubbing the forehead and temples to soothe oneself. Like squinting from light. Like running to the bathroom to throw up. Who would be this perspective?!

Soon enough, I became one of the 62% statistic mentioned above – downplaying my symptoms so people would not think I am a liar. This led to decades of hiding my condition in the closet.

I told myself that I need to pull my bootstraps and do it anyway. I wanted to persevere so badly, perhaps partially to prove to the world that I was just as capable if not more capable than those who didn’t have a migraine to manage. Here are just some of the things I did while having intense migraine pain without a soul knowing about it:

1. Sat through hours of reading homework with my daughter to help her improve when she was behind
2. Took 4am flights to international destinations for my job travel throwing up on the plane all the way to the destination
3. Conducted successful high-pressure presentations to clients and management
4. Took care of my ill parents in the hospital
5. Drove to business meetings for several hours
6. Went to job interview after throwing up all night from a migraine and landed the job by the way

Migraine disability is real. So is the stigma attached to it. The more stigma I saw in the school and workplace toward it, the more silent I became about my migraines. At some point, I was feeling numb inside from all the silent suffering.

Raising awareness is the only way out of this. 

And then I had an AHA moment. Maybe it took me reaching a state of deep migraine disability to gain some perspective. Maybe I was just sick and tired of the status quo. Maybe I finally had enough reflection time. But it hit me like a lightning strike. If 62% of us downplay or altogether hide our condition, then how could we expect anything but a lack of awareness and stigma?! It is on us to change it.

The real question I had to do some soul-searching about was whether I could be THIS vulnerable and open up about my battle in a bigger way. My answer was a resounding yes. I was finally ready. Starting MigraineLiving blog was my way of raising awareness about this crippling disease. And this is just a start.

There is so much more that can be done to move the needle. What could we do together to reach the same level of awareness for disabling nature of migraines as heart conditions achieved today? What could someone who suffers from this condition or has a loved one with it do about making a shift from stigma to understanding?

Finding my voice to raise awareness about migraines and migraine disability helped me find a myriad of ways to get involved. I was honored to recently become an American Migraine Foundation Advocate and am now part of a very accepting community that drives awareness one meeting, one local area at a time. It will take many of us to make this herculean change. I encourage you to find the smallest way and get involved!

At a minimum, you can find some amazing and supporting circle of people. At best, you can be part of the positive change at your place of work, at your child’s school, at your church, and in this world at large.

Here are 4 small but tangible steps you can take to start driving change wherever you are:

Help your employer be more educated and aware.

We spend a considerable amount of time at work, so you can start by raising awareness of migraine and migraine disability with your employer. Next time your workplace has a health initiative, you can easily share the tools from the MigraineAtWork organization with your HR team. The tools are simple yet powerful as they help any employer become more educated about this condition and make the workplace more migraine friendly. They offer webinars about how migraine impacts people at work, fact sheets about migraine, panel discussions on migraine and disability, and much more. Take a look here: https://migraineatwork.org/employers/

Ask your employer for some reasonable accommodations

Your migraines may not always result in needing to file for migraine disability like I had to. But the disabling nature of migraines in general requires some adjustments for one to be productive and successful at work. Some employers will make certain accommodations if you are able to clearly outline your request.

Here are some examples of reasonable accommodations in the workplace:

• Working from home when required

• Flexible working hours, to work around migraine
• Different lighting
• Reducing noise

It is important that you prepare concrete examples of how work may trigger migraine or make it worse, as well as steps that your employer can take to remedy the situation. On the positive side of things, I once saw a cubicle of my co-worker covered in a tarp-like material with dimmed lights inside. She was suffering from chronic migraines and needed this accommodation. The employer gladly did it. This example gave me hope. I learned that for every situation with stigma, there will be one that shows compassion and care.

Help your child with migraine in school.  

Migraine at School is an initiative run by Danielle Byron Henry Migraine Foundation. Their team provides resources that create a migraine action plan for schools, parents, students, educators, and more. 10% of kids going to school today are suffering from migraine. 

While we can’t magically stop migraine attacks, we can certainly make the child’s environment more accommodating toward their condition. Every teacher that can be educated about migraines will make a huge difference in the life of a child with a migraine. I often wonder what my trajectory could have been if my teacher was supportive and understanding. Would I have suffered this much in silence? Would I have hidden my condition in the closet for this long? Probably not. I may have had more courage to speak up and advocate for my needs.  

Bring migraine awareness to your community.

American Migraine Foundation offers a variety of ways to get involved such as becoming an emerging advocate or an ambassador. https://americanmigrainefoundation.org/living-with-migraine/advocacy/. I have completed their Emerging Advocate program and will be writing more on my community initiatives soon.

Spread the word

June is Migraine and Headache Awareness Month. Be sure to visit National Migraine & Headache Awareness Month for a list of events happening in June. In addition, I know of a couple of awareness initiatives that are worthy of consideration.

• Chronic Migraine Awareness is a non-profit whose mission is to amplify the voice of the chronic migraine community. They have a number of ways to raise awareness – from participating in rallies to the remembrance of those who died as a result of migraines. One of the initiatives is called Proclamations – where you can work with local government to raise awareness and collaborate with a mayor of your city to dedicate a certain day to a migraine awareness day for that city. Find out more here: https://chronicmigraineawareness.org/mham
• International Headache Society runs a migraine awareness program each June. You can find out more here: https://ihs-headache.org/en/resources/migraine-awareness-month/ What I like about this initiative is that spreading the word doesn’t have to be time-consuming or laborious. You could simply re-post a migraine awareness banner on your social media page to give this condition more visibility and awareness among your network.
• #Shadesformigraine. June 21^st is the longest day of the year. Wear sunglasses that day and post a picture of it on your social media to raise awareness of migraines.

Have fun with it! Find something that speaks to you as an authentic and genuine way of changing the stigma around migraine and their disabling impact on our life.

Summary

Migraine disability is real. The impact of migraines on one’s life is profound in every aspect from school to work to social life. Migraines are also isolating because the majority of people around us underestimate this condition or simply don’t understand it. Start educating those around you, even if it starts in your own home. Ask yourself a couple of basic questions: Do my loved ones know about my migraines? What about my co-workers? Did I have a conversation with my children about it yet? Any increase in awareness about this will help you and many migraineurs in the future.

References:

1. Survey reveals many people with migraine live with pain nearly half of every month [news release]. Eli Lilly and Company: Indianapolis, IN; February 20, 2018. www.multivu.com/players/English/8259051-lilly-migraine-impact-report/. Accessed October 22, 2018.
2. Eli Lilly and Company. 2017 Migraine Impact Report: executive summary. www.multivu.com/players/English/8259051-lilly-migraine-impact-report/docs/ExecutiveSummary_1516320372594-121193785.pdf. Published January 2018. Accessed October 22, 2018.

Migraine Blog