June 2019 is the 7th annual National Migraine and Headache Awareness Month. This year’s theme is Sowing the Seeds- planting the seeds of migraine awareness in hopes of growing education to crowd out the stigma weeds, leading to more disease visibility and validation, support and stigma reduction, better protection and policies, safe and effective treatments, more specialists and potentially a cure. There are multiple dates throughout the month for specific awareness, like Migraine Solidarity Day on the 21st and Chronic Migraine Awareness Day on the 29th. Two fellow migraine warrior advocates, Natalie from @mindfulmigraine and Amy from @the_migraine_life, also started a Mighty with Migraine campaign this year on Instagram that was so great to participate in. I have been trying to get this blog done before the month was over but that just didn’t happen because I didn’t have it in me to get it done on time with my symptoms, but better late than never.
What Sowing the Seeds Means to Me
Sowing the Seeds means planting and scattering seeds to take root and grow. Tending to sown seeds with watering, feeding and fertilizing, and both sunshine and cloudy days. It means growth in different ways. Diversity of both the seeds and soil matter, not every seed will sprout and a lot depends on the fertility of the soil. It’s having patience for the process. It’s not being afraid to get our hands dirty and weeding out stigma. It’s sprouting research that leads to a better future for treatment and hope and maybe even a cure. It’s reaching for the light and caring for ourselves like a plant. Letting our roots run deeper even in the drought and letting ourselves be pruned and prepared for new growth. It’s opening and speaking up with our experiences and continuing with advocacy and awareness efforts, awaiting and anticipating the production of fruit and flower blooms.
Why Awareness + Advocacy? Stigma Severity: Why Migraine Matters
Managing migraine is tough, but not as much as dealing with the stigma. Even when I try my best to communicate with others about it, the stigma is usually still there like a brick barrier between us. Migraine advocacy and awareness brings hope for moving forward with migraine. We are in a new era with the recent year-old release of the first medications specifically designed to treat migraine symptoms, and more research is being done for others- all only as a result of previous advocacy and awareness.
I wore a mask for most of my life with migraine and it did so much damage that I want to tell everyone with migraine to start speaking up and share their story. I felt so broken for so long and I didn’t have peace about it until I started getting connected with others struggling and saw a migraine specialist for a year who helped explain my migraine to me. If you have migraine, use your voice and speak up! You’re so strong and your story and experiences are so valid and valuable more than you know. It just might help you connect to someone else with it. Don’t live and hide behind a mask or in isolation. Have courage and courageous conversations as they come up. Language matters so much- change the way we talk about migraine with the appropriate language- meaning that yes, we have to acknowledge that headache is, in fact, a part of migraine disease- but ‘migraines’ should correctly be called ‘attacks’ or ‘flares’ as part of migraine disease. Get to know and understand your migraine- the frequency and intensity of attacks, pain (and other) patterns, triggers and your threshold, and be committed to living well with managing migraine. Take good care of yourself: eat a healthy diet with lots of plants, get moving regularly, drink more than enough water, have a sound sleep schedule, a healthy stress outlet with some laughter and play and creativity mixed in, try treatments and integrate different strategies to find what works best for you in your migraine-friendly living toolkit. Consistency is key over perfection. Build and sustain a strong support system. Advocate for yourself and ask for help if it’ll help you. Educate and engage with others about migraine. We may have an invisible illness but we are not invisible. Acknowledge and don’t diminish your pain but don’t dwell on it either.
I haven’t been to church since Easter. My husband and I left our old church and planned on taking a couple Sundays off before looking at others, and I realized I needed to take some time because I’m still struggling with working through hurt and being in a place to walk into a church and start again knowing I will most likely encounter the same stigma and downright undeniable discrimination, yet I have hope for a true church home. I’m seen as a druggie. A hypochondriac. Someone who needs a lot of prayer (not just for my migraine but my ugly heart that’s apparently causing my migraine). And I should keep trying Tylenol and stop using cannabis. I was prayed for for healing and I did a couple months of prayer counseling. I spent 6 months doing deep healing in a Women of Courage group led by a former female pastor. I loved worshipping and volunteering and I was seen as a stoner and not believed and stigmatized and discriminated against. I’ve been stigmatized more by Christians and people in the church than anywhere else: you name it- I have a sin issue or I’m not praying enough or I’m a drug addict smoking the devils lettuce or whatever. I experienced this the most direct from the youth pastor for a whole church (who also baptized me 5 years ago) and his wife, from people who are supposed to be representing the love and humanity of Jesus Christ. They wouldn’t let me babysit after I came out with using cannabis as medicine, I wasn’t allowed at their house if I had recently taken cannabis as medicine, they “joked” that I wouldn’t be allowed to live as a part of their fantasy church group commune because of my medical marijuana use, and when I finally mustered up the bravery to have a courageous conversation with them about this the response I was given was “I’m sorry you feel that way” and I was completely dismissed and ignored as if I didn’t exist as a human being whatsoever and to this day I haven’t been acknowledged by them (even when we went through a really rough separation and they knew extreme abuse was a present factor). That is discrimination and no longer just stigma. Them and many others like that still stand in ignorance and stockpile the stigma against migraine. That’s fucked up. It’s one thing to disagree with my choices, but it’s a completely different thing to treat me so awfully and inhuman because of it. I’ve been ‘friends’ with people who suddenly walked out of my life when I opened up about living with intractable chronic migraine. That’s why we need migraine advocacy. I love and miss church so much. The worship. The preaching. I know my soul is hungry for church and community but it’s so hard with barriers. My support system is small. Stigma has left me with a small social circle, but I’m slowly building and rebuilding some relationships in my life. I don’t have many friends. Not many people get me or try enough to relate to me to keep any sort of relationship and to be honest I’ve stopped trying with those people and started finding my own little tribe. Part of it is other people living out stigma and part of it is my own migraine struggles. THIS IS WHY MIGRAINE MATTERS.
I only know a handful of people in real life that have moderate to severe migraine disease, and only another handful that I know of with an occasional migraine attack. Finding connection with these wonderful warriors is refreshing and reminds me that I’m not alone. Recently I got to know of a few people that have migraine disease and headache disorders- my husband’s coworker has chronic migraine and another coworker’s wife has chronic migraine, and my neighbor a few doors down has intractable cluster headache. 3 people in a small town that are experiencing something so similar to myself and I am just now making these discoveries. Why? Because we have been silent because of stigma!
“Migraine gets lousy press. Sure, we get a lot of articles in women’s magazines on ‘holiday headache,’ ‘foods to avoid,’ and ‘sex and headache.’ Unfortunately, these types of articles encourage the notion that migraine is a nuisance disease, lead to misunderstanding for the journey of people with serious and disabling migraine, and ultimately restrict funding for the research that will lead to meaningful treatments for people who really need them…The NIH spends about 20 million dollars a year on migraine and headache research. This may seem like a lot, but it is actually a tiny amount. If migraine was funded like other diseases that cause a similar amount of disability it would get from 200 to 400 million dollars a year. One reason migraine research is so poorly funded is because of the social stigma of the disease. In a study of research funding of disease, the social stigma of the disease was an important factor in determining which diseases get funding. Disease advocacy was critical in reversing stigma and improving funding… Stigma is the extreme disapproval of a person based on a disease or characteristic. A person with a disease hears and experiences this disapproval which is called ‘enacted stigma.’ Eventually this leads to internalization of these beliefs through a process of self-concurrence which leads to ‘internalized stigma,’ causing psychological distress. For other diseases, there have been concerted efforts to reduce stigma. Good examples are AIDs and epilepsy. These efforts have been successful, and as both diseases were de-stigmatized; they got more research money. Disease stigma can be reversed. In order to do this, we need an understanding of why migraine is stigmatized and we need an effective plan on how to reframe it. Unfortunately, the ignorant public sees people with disabling migraine as morally weak for not functioning normally despite their headaches, and having them because they did something wrong by not properly addressing their lifestyle. The disease itself is, bizarrely, perceived as either being easy or impossible to treat. Part of this comes from pharmaceutical companies who have touted their medications as very effective, undermining the very large group for whom they don’t work. The other problem is that the pharmaceutical industry, along with the world of academic headache medicine has emphasized the large number of people who have migraine, without differentiating the mild from the severe. Saying that 36 million Americans have migraine (and implying they should be on an acute medication and a preventive) is good for getting investors to see the market potential of a drug, but it undermines the credibility of migraine as a serious disease. At some level the public says that if that were the case, they should know dozens of people with that serious disease, and they believe that they don’t. There are two reasons for this misunderstanding: the epidemiology mixes in the a few Excedrin a year person, with the person who is on three preventives, uses 3 abortives and still has out of control disabling migraine. The other reason is that people with migraine hide what they actually have, and people around them don’t know what is going on in their lives, because of the social stigma. So what can we do about it? I believe the headache community must take responsibility for reframing migraine into something that is both true and sympathetic. This should not be spearheaded by drug companies, but by the community of persons with migraine, the doctors who treat them, and the scientists who study migraine. But most importantly it should be done intelligently, and not repeating past mistakes…How do we reframe migraine effectively? Any new frame must be very simple, and attention getting. The American Headache Society’s ad hoc committee on reframing came up with this new frame: 1- migraine is severe; it is common to lose a job or have a severely restricted social or family life due to migraine, and 2- people with migraine are sympathetic, good people doing as well as possible in the face of unrelenting pain and associated symptoms. I would go further; persons with migraine are heroic, carving out their best possible lives even when there is little effective treatment, and damn little understanding.” – Dr. William B. Young in his article on Migraine.com, Re-Framing Migraine
“Neurologists, while they are considered the typical go-to ‘headache and migraine doctors,’ aren’t as informed and qualified to deal with us as we believe them to be. According to the World Health Organization, doctors who don’t specialize in migraine and headaches receive only about four hours of undergraduate training on headache conditions… Even in the neurology specialty, as stated by the University of Headache Center, School of Osteopathic Medicine, there are only approximately one to five hours dedicated to migraine and headache education during residency lectures. Some neurologists spend no time at all on headache disorders during their clinical residencies, and the average time spent is just one hour total. Clearly, there is a lack of knowledge and awareness not just among general doctors but even neurologists — the very individuals we are supposed to trust with our pained brains. Furthermore, as of 2017, there are an estimated 38 million migraineurs and only about 500 headache specialists in the United States who have demonstrated competence in headache healthcare, as per the Migraine Research Foundation. Some states have no migraine or headache specialists at all, meaning that many migraineurs are forced to travel far and wide for adequate treatment.” – Jorie Logan Morris in her article on themighty.com, When a Doctor Gave Up on Treating my Migraine and Told Me to ‘Live with It’
“In the United States, disability carries stigma, especially when the disease is something no one can see (i.e. invisible illness)….If I’m honest, though, my reluctance to acknowledge my disability stems more from my own feelings of uselessness than from any external judgment….To admit disability, then, means admitting that this isn’t a one-off event. That days like this – when I feel like so much less than the woman I know I am – will happen again. And again. And again… I practice good self-care and I stay as prepared as I can for the bad days. But those bad days, inevitably, come. And, when they pile up, day after day, week after week, I am forced to remember the one thing I’d prefer to forget: I’m sick.” – Sarah Hackley in her migraine.com article Yes, Migraine IS a disability
“When I asked Canadian Migraine Specialist Dr. Elizabeth Leroux why migraine research and treatment is so egregiously underfunded in proportion to the widespread disability it causes, she noted migraine stigma and some of its many roots. She brought up sexism; lack of effective treatments; patient blaming; association with factors that are already stigmatized (weight gain, anxiety, depression, and a lack of productivity). Lastly, she pointed out that the variability of the disease leads to some confusion. ‘The complexity needs to be addressed by education. Migraine is variable. We have to stop imagining that is a 1 or 0 thing.’ Migraine, sometimes, is a highly manageable inconvenience with a primary complaint of head pain. But it can also be a trip to hell and back, uphill both ways… How do we acknowledge that someone’s aunt resolves her migraine attacks with over-the-counter pills while also asserting that we’ve left a career and been struggling with depression for years because of the same condition? I don’t have any concrete answers, but I do know that the denial of less severe or disabling migraine attacks is dishonest. Maybe we need to talk more explicitly about migraine as a spectrum, including the variability of effective treatment plans in individuals. Maybe if people understood migraine as a spectrum – one that includes everything from mild or infrequent attacks to chronic, severe attacks – it would be a significant step forward in helping migraine receive the kind of attention it deserves.” -Anna Eidt in her migraine.com article Migraine is not a 1 or 0 thing
“One thing I am learning is to accept not having all the answers. To kind of ‘breathe into’ the disease and realize that there are still many more unknowns than knowns. To realize that I don’t need to have all the answers. I’m learning to shrug my shoulders and say, ‘I’m not really sure,’ or ‘I wish we had the answer to that.’ I’m learning to accept the really bad days without letting them stop the occasional good ones. To actually rest when needed. Really rest! And to let go of guilt for the things I can’t do, pick myself up time and time again, and keep on going!” -Shoshanna Lipson in her migraine.com article Some Migraine Questions May Not Have Easy Answers
The Reality + Chaos of Chronic Migraine
“The impact of chronic migraine can be very disabling. Being incapacitated for over half the month sometimes means that people are unable to work at all, with some claiming disability living allowance. Unfortunately, in many cases, current therapies are not enough to prevent or reduce the impact that chronic migraine has on people’s lives. This can lead to sufferers frequently becoming depressed and unable to cope. The World Health Organisation (WHO) has recognised the impact of migraine worldwide and categorised it as the same level of disability as dementia, quadriplegia and acute psychosis. Furthermore WHO classified chronic migraine as more disabling than blindness, paraplegia angina or rheumatoid arthritis.”- https://www.migrainetrust.org/about-migraine/types-of-migraine/chronic-migraine/
…And yet those of us with chronic migraine have to fight so much harder to receive disability benefits and the respect and dignity like these other disabilities.
“Everyone will experience it differently, having different triggers and solutions, which is the most important characteristic. Paying attention to how differently this condition acts can and will prove to be the solution that can bring each of us closer to remission (goodbye triptans, hello totally individualized approaches)” -A. from mylifemymigraine.com
Managing life with chronic pain and low energy and the accompanying baggage and mental health struggles that come with the disease is hard. I am thankful to be able to work part-time and live a life where I can have some balance with managing my migraine, but it’s messy. The rollover to-do list- put all the things on it and then maybe get half of them done and put the rest for tomorrow and that’s just a daily thing I’ve come to accept. I go through way too many post-it notes. Learning to go with the flow some instead and realizing how much grace is oh so necessary and I need to have realistic expectations because no one can do it all. My migraine pain is constant and fluctuates in severity and my level of functioning changes depending on that- what I do and how I do it. I don’t have the typical standard stages of a migraine attack- my brain and body are essentially stuck in the prodrome phase with the headache, and when my symptoms get worse with triggers or known patterns I try my best and have to ride it out and hope I’m doing better the next day- sometimes I am and sometimes it takes days to go back to baseline. My triggers and patterns get layered sometimes, making it a little more of a process. Simplifying life, prioritizing, and focusing on what’s important, balancing living life and pushing through and resting and recovering is the best way I’m learning to live with it. It’s being slow and steady with unsteady moments. Things get postponed and put on hold a lot. Chronic migraine means having hope for improvement but also accepting it as it is. You have a disease that’s a part of your life so you do what you can to live well with it and make it your friend, freeing yourself to live your life. Migraine affects every aspect of our lives and seeps into our relationships (if we have them). It’s been a challenging learning curve of managing migraine and not let it ruin my marriage and relationships. A lot of it comes down to me effectively communicating with others, doing my best and making the most of things while having balance and boundaries. I could go on and on about it, really- and there’s a time and place for that. But what matters most is living well with it regardless. You can’t wait for pain to pass to start living- even if it looks a little different. Some days are easier and harder than others. My day-to-day migraine disability is physically, mentally, and emotionally draining. Withdrawing from things. Living a small life. Feeling awful all the time and trying to function normally. Being completely misunderstood like somehow my pain isn’t valid or its lesser than because I am living my life. Everything requires so much energy that I don’t seem to have. It’s constant sensory overload and sensitivity. I try but I usually have dirty dishes and a messy house. I don’t make as many good home-cooked meals or engage in enough intimacy with my husband. Dealing with so much stigma that’s just as crappy as the migraine itself is draining. We can change some factors and we have to learn to live with others, but regardless of the factors that cause migraine in individuals, living well and having a healthy lifestyle with our current condition should be the goal.
“Listening to my health means hearing my body when it says it has had too much and that I need to slow down, and then actually slowing down in response. Despite living with chronic migraine for a decade, I continue to struggle with this. I often get frustrated that I cannot do as much as I would like as quickly as I would like due to this disease. However, if I don’t listen to my health about my limitations, then I find myself in a much worse place, unable to accomplish even the smallest of tasks while my overworked body takes the time it needs to recover… The migraine brain craves consistency. Respecting my health as an equal partner means that I must acknowledge and respect this truth.” – Sarah Hackley in her Migraine.com article Building a Relationship with Health to Live Well with Migraine
Resources for More Information
“Migraine is widely misunderstood, which contributes to the lack of treatment options and stigma surrounding the disease. While dealing with misconceptions about your migraine is like having salt rubbed in a wound, the American Migraine Foundation seeks to equip patients with the tools and resources they need to manage their disease and receive the treatment they deserve… While there is no cure for migraine, there are treatments intended to reduce attack frequency and stop individual attacks when they occur” -American Migraine Foundation
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