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By Dr. William B. Young

I have a patient with severe chronic migraine who I took care of many years ago. She got somewhat better and was able to complete her education, get married, and have twins. After that her migraine worsened, and we have not gotten her migraine into very good control. A few months ago, I judged she might be at a place where she could not work but might be able to volunteer to work a few hours for Miles for Migraine, a charity whose board I am on. This is something I try to do carefully, and only if a patient seems to be at a place in their life where it might make sense for them. She seemed interested but she never did volunteer. At her next visit, trying to not let her feel bad about it, I said: “I understand, you just didn’t have the spoons for it.” This led to an explanation of spoon theory, since she had not heard of this.

Apparently, our conversation hit a chord. She told her husband, and he went out and bought a beautiful antique spoon, which he had made into a necklace for her.

Using spoon theory to explain migraine

My patient’s mother had demonstrated a lack of understanding about her disease, and had been saying those little ignorant things (I call them micro aggressions) that are so hurtful to people with migraine. When she saw my patient wearing her new spoon jewelry they had a conversation about it that helped her mother to understand her disease better, and improved their relationship.

Confronting migraine stigma

As a community, we need to find ways to address the stigma of migraine by confronting it and having conversations that may be difficult, but just might change the hurtful perceptions of others. We cannot let a culture that is so cruel and ignorant toward people with headache diseases go unchallenged, and we know that only the people with the disease, or in some cases their loving family, can change disease perception.

Migraine sympbols to raise awareness

We should use the symbols that are out there, like spoons in this case, or perhaps find new ones to catalyze these all-important conversations. CHAMP, the Coalition of Headache and Migraine Patients, has a committee to think of new ways to do this. We have finalized recommended language and images to use and not use that we hope will reduce the stigma of migraine. We are hoping to find ways for patients to share the successful and unsuccessful ways they have confronted their stigmatizers, so we can learn from one another.

Right now, there is the purple ribbon, the Miles for Migraine and Runnin’ for Research walk/runs and of course, the spoon. Are there other symbols that could represent another aspect of migraine disease (or cluster headache for that matter) that we should be using? I think another, surprising and interesting symbol might be helpful. Do you have a suggestion?

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By Dr. William B. Young

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.

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.

Several years ago I read a paper on measuring stigma in various diseases, and the very next day an intern in training at our facility who had a month of research elective asked if I had a project for her. So we measured stigma in episodic migraine and chronic migraine patients in my clinic, and in epilepsy patients in the epilepsy clinic. On average, the chronic migraine patients had worse stigma scores than either the episodic migraine or epilepsy patients. You can hear more about my research on stigma on YouTube, or read the original article.

Patients who sit in my waiting room are not the average persons with migraine – their disease is much more severe. More than 45% of the chronic migraine patients and 20 percent of the episodic migraine patients were unable to work due to their migraine. The epilepsy patients’ ability to work was similar to the episodic patients.’ In large part the worse stigma of chronic migraine related to its relationship with the ability to work. For both episodic and chronic migraine, there was no relationship with a person’s gender, age, or income: stigma hits everyone.

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.

The problem for now is how do we study a new frame? How can we know it is going to help, before we make a concerted effort to gain acceptance for it? We need to determine the most effective frame that leads to what we all want: more understanding of the disease and help for the person who has it, more research, and better treatment.

If we can study a series of frames, find the one that is most effective and all get on the same team in changing the perception of migraine, then migraine patients will be less stigmatized, research will get funded, and the lives of all persons with migraine will improve.

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By Dr. William B. Young

When someone says, “My migraine is caused by stress (or the weather, or menses, or red wine),” they are wrong. They are trivializing and damaging people who have a serious disease. Don’t let them get away with it.

There is a difference between a trigger and a cause. A trigger starts something that is primed to happen; while a cause is the reason for something to happen. A trigger is a small thing, and in the case of migraine ignores the things that are most important about why migraines happen. When a person does not make the distinction between trigger and cause they are harming themselves and other people with migraine.

If I said my leg broke because I stepped on it too hard there might be a certain truthfulness to it. But, if I neglected to say there was a tumor with the consistency of Jell-O that had replaced 99% of the bone where it broke, I would be neglecting a much more important truth about my condition. When you let someone (maybe yourself) get away with thinking of migraine as caused by a trigger, it either makes it your fault (you ate that cheese after all) or hopeless (you are screwed; you can’t control the weather). It is like blaming a driver hitting a pothole on a road that has millions of them. It would be better to blame the road; then maybe it would get fixed.

I am not saying one shouldn’t manage stress, sleep better, and avoid certain food triggers. These are simply not causes. Migraine is a serious brain condition caused by things going wrong in the brain and pain nerves. The cause is complicated, argued about, and worth spending hundreds of millions of dollars to understand better. The cause of migraine includes genetic factors, brain remolding from exposures, and physical and other injuries that occur over a lifetime. In truth, it is hard to explain, and that is why it is difficult to get away from the oh-so-easy (but wrong) mind trick of flipping trigger and cause.

So let me suggest that the next time someone makes this mistake in your presence you say: “____ is just a trigger. You can’t live a real life and avoid all or even most triggers.” Be prepared for the question, “So what causes migraine?” My suggested answer is: “Migraine is a genetic and acquired predisposition of the brain’s pain, nausea, and light sensitivity centers to turn on together and incapacitate a person.” A nice flourish might be to add, “Do you realize it is the seventh most disabling medical condition? Mixing up trigger and cause belittles what is often a very serious disease.” Then turn it back to the perpetrator and ask them to use the word trigger if that is what they mean, not cause.

The words we use matter. They help to determine how migraine is framed in subtle and often quite negative ways. This little effort might do a great deal to change the way migraine is perceived. So please, take the pledge: “I will never let someone get away with mistaking trigger for cause.”

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By Dr. William B. Young

The words and phrases we use subtly influence how we and others think about the world. This matters a lot for migraine. It is hard to change people’s preconceived, ignorant notions and arguments just don’t have much of an impact. I’ve been arguing for a long time, and I don’t think it has changed the general perception of this disease. But people copy what others say; if for no other reason than we are wired to do so. So why don’t we who understand this disease, either because we have it, or because we treat it, or because we study it, choose to talk about it in the most beneficial way we can?

Years ago I would have resented someone supporting politically correct speech. However, over time I have come to see how certain words and phrases undermine people with migraine, minimizing the impact of disease, and perpetuating the stigma of migraine.

What do people say that undermines migraine and those who have it, and what can we say that accurately portrays this condition in a non-stigmatizing way? What sets the stage for recognition of the impact of migraine, the value of effective treatment, the need for more research and better policies, and for maybe, just once in a while, a little compassion?

Years ago, Joanna Kempner and I, in collaboration with many others, wrote a paper entitled, Naming Migraine and Those Who Have It. Joanna wrote the award-winning book Not Tonight: Migraine and the Politics of Gender and Health crystalizing, for me, the need to take on a new approach. I slowly came to a number of conclusions regarding the language that describes migraine. Recently I have noticed, or have been pointed out, a few other things doctors say about migraine that are now really getting under my skin!

So let’s get to it!

  1. Migraine is a disease when it has a real impact on someone’s life, or when it progressively worsens. It is a condition only if the impact is small, or when it is a risk factor for another thing. Merriam-Webster defines disease in this way: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms. Clearly, migraine is a disease; so use that word!
  2. Migraine, not “migraines”. Saying “I have migraines,” implies you have a few of them. If you have migraine, you have a disease or condition that can strike at will, and whose potential is always there. Sorry— that’s the truth of the matter.
  3. Migraine, not “migraine headache”. Migraine is a heck of a lot more than a headache. If you want to emphasize the headache part of it, say “the headache of migraine”.
  4. Person with migraine, not “migraineur”. A migraineur is a person for whom migraine is their entire being and wrong the same way “epileptic,” “schizophrenic,” or “retard” is wrong. A person with migraine is not necessarily defined by their disease. Similarly, don’t say “migraine personality” or “migraine-type person;” that’s just wrong!
  5. Never call anyone else a migraine sufferer. If you want to emphasize the suffering of migraine in yourself, then do so. I don’t think I have the right to do that for anyone else.
  6. Rebound headache, or medication adaptation headache, not “medication overuse headache (MOH)”. Medication overuse headache is subtly blaming the person who has it, even when it is the doctor’s fault for prescribing daily abortives or not educating the patient. Now, there are several concerns, but to my mind they don’t override this argument. Firstly, MOH is the official name and the classification group has not been receptive to changing the name. Secondly, “rebound headache” is wrong about the mechanism and suggests that it is just an attack bouncing back, disregarding the most important thing: the brain has been damaged over time by medicine that helps in the short run. Most of the time people understand what you are talking about when you say rebound, so for now, I prefer it to MOH. There are things only doctors say that irritate me. Here are two such things:
  1. Unmet needs. Why don’t you just say “treatment stinks,” or “there aren’t enough headache doctors,” or whatever?! Not to mention, who gets to decide what people need? It implies whatever the speaker wants it to mean without having to examine the assumptions behind it.
  2. Barriers to care. To me this sounds like trying to make a problem sound less severe. How about, “reasons people with migraine can’t get good headache care”? I made a convenient table to summarize:

I believe that if we consistently use the right words and phrases then over time we can normalize the concept that migraine is serious, yet not self-defining. This will bring what we all want: more research, more treatments, less hostility, and less stigmatization.

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By Heidi Brehm

Advocacy is an essential part of my migraine treatment tool kit. It’s as effective as managing my diet, daily exercise, meditation and mindfulness, taking supplements, and healthy sleep habits. It is more powerful than any of the preventative prescription treatments I’ve tried (and I’ve tried many). That’s why I’m so happy that at this year’s Headache on the Hill (HOH) I
got a big, wonderful dose of Advocacy.

Advocacy isn’t able to make my symptoms disappear but it is extremely powerful because it gives me:

Hope – From the moment that I applied to HOH, I began to anticipate a trip to Washington D.C. HOH also gives me hope for the future. It is encouraging to know that a group of patients, doctors, and researchers are working to convince Congress to support migraine and headache research and treatments.

Purpose – I was able to link my life to a cause bigger than myself. This year at HOH we had meetings at 201 Congressional offices to ask for co- sponsorship of the Opioids and STOP Pain Initiative Act of 2017 (S.2260, H.R.4733) which, among other things, will allocate funding to discover and develop new migraine and headache therapies. Empowerment- HOH helps me transform my view of myself as a victim into the image of a warrior fighting for the care I deserve.

Community – 148 advocates from 39 different states gathered for HOH 2018. Chronic migraine can be so isolating. It was wonderful to be reminded that I’m part of a large, intelligent, and powerful team.

Value– Advocacy let’s me know that others care about me, they empathize with my suffering and frustration, and they are willing to fight with me. In the last few weeks, my friends and family have sent letters to their Senators and Representative supporting the bill I went to Washington D.C. to get co-sponsored and passed. The legislative aides, with whom I met
during HOH, showed concern for our plight and expressed their willingness to help us. They conveyed that my life, and the lives of others in pain, have worth.

Want a two minute dose of advocacy? Send a letter supporting the Opioids and STOP Pain Initiative Act of 2017 to your Members of Congress using this link.

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By Dr. William B. Young

Disease advocacy is everywhere. Pink ribbons abound, as do signs for the American Cancer Society, MS, Parkinson’s, Heart Disease, Alzheimer’s, ALS, Leukemia and the list goes on. People come to support these diseases and do something healthy and fun. But where is the disease advocacy for migraine and cluster headache? Why is that migraine, – the disease that is number 7 in terms of disability, number 20 or so in terms of impact – is completely invisible in the advocacy world?

The answer, of course, is stigma. People with migraine and cluster headache, and the doctors who care for them, are so beaten down by the disapproval of society for them and their disease that we don’t advocate enough for ourselves. When we can’t do it ourselves, our families and friends also don’t do the advocating like they would if we had other diseases such as cancer, multiple sclerosis or Alzheimer’s.

If you have migraine or cluster headache, in addition to your pain, other symptoms, and disability, you have the additional burden of societal disapproval – stigma. You can search through a dizzying number of approaches to control your headache disease and you may or may not get decent results. But there is almost nothing you can do about the stigma – the subtle digs, the ignorant suggestions, the condescension, and the outright meanness that you face. If you were struggling half as much with cancer, back pain, or most other diseases, you would get a hundred times the support and compassion. I have suggested that the way we use language (see my previous blog) can begin to reverse the stigma. On the other hand, participating, supporting, sponsoring, or volunteering for a series of new walks/runs popping up around the country is a much more powerful approach to reversing the stigma. History shows that almost all recent successful disease re-branding efforts have come through patient participatory movements. For example, AIDS and cancer each brought together their communities and successfully confronted the country’s biases, which led to more research and more acceptance. Just going to a walk/run for migraine is a revolutionary idea to many in the community who don’t get it.

Things are starting to change. Miles for Migraine will host its 3rd walk/run this year in Philadelphia on October 8th (San Francisco and Chicago were in August and September). Runnin’ for Research will host its’ three races on October 8th as well. Miles for Migraine plans to expand the number of walks/runs around the country over the next four years to 25 events. Next year we are adding walk/runs in Washington DC and Phoenix, Arizona. Soon we will grow by 6 or 7 races a year.

There is one more powerful action step you can take to fight against the stigma of migraine in addition to participating in an advocacy activity like a walk or race: ask others, who don’t have migraine or cluster headache, to participate and support you and your struggle. Ask them to personally contribute, or their businesses to sponsor these walks and races. Welcome the chance to tell them that migraine and cluster headache have the least research support from government or foundations relative to their huge burden of illness. Their efforts and money may therefore have more impact and might do more good than participating in other races for diseases that are much better funded.

Let me tell you a little about the two organizations that are conducting walks and races. Miles for Migraine races take place in large cities with headache fellowship programs. The money raised locally is used to support research and the education of headache experts in these cities. Part of the money is used to support national organizations like the Alliance for Headache Disorders Advocacy (AHDA). Miles for Migraine runs adolescent migraine camps and half day educational sessions for the community. Runnin’ for Research raises money for migraine and cluster headache research and sends it to national organizations like the American Migraine Foundation. It also supports the American Headache and Migraine Association (AHMA).

So please, log in to http://milesformigraine.org/ or http://www.runnin4research.org/, come to the races if you can (and bring your family and friends), or donate, volunteer, or sponsor the walk/run.

Dr. Young is the President of the Alliance for Headache Disorders Advocacy and Board Member at Miles for Migraine.

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By Katie MacDonald

Since there isn’t a Miles for Migraine event that takes place in my area, I needed to come up with my own way to participate. I am a huge supporter of the Miles for Migraine organization. I greatly admire all that they are doing to increase awareness about Migraine and reduce the stigma many of us feel. They are working on fundraising to support more research and they support the advocacy efforts of organizations like Alliance for Headache Disorders Advocacy. I wanted to find a way to be a part of their magic and I did that in a unique way this spring.

I am not a runner. Similar to many other people with Migraine, running just doesn’t work for me. Ironically, my closest circle of friends is a group of people who love to run and they have told me that when a Miles for Migraine event comes to our area, they would be sure to participate. As we got to brainstorming one night, we thought, “What if there was a way to collect donations for partaking in an event of my choosing and funneling those donations back to Miles for Migraine?” Lots of people sign up for organized 5K “fun runs” in their communities, what if they could use one of those runs as their own personal Miles for Migraine run? I reached out to Shirley with this idea and a few months later the Miles for Migraine Virtual Race option was born.

This spring my boyfriend Dave, an avid runner, decided to do the Vermont City Marathon. We decided to make this our Miles for Migraine Virtual Race. I helped him by getting set up with a Crowdrise account (https://www.crowdrise.com/miles-for-migraine—virtual-), wrote a personal description of why this was important to us and set our fundraising goal. We sent an email out to our immediate family and closest friends and shared the link to our Crowdrise page on Facebook as well. Dave declared that if I could manage Migraine on a near daily basis, he could take care of the running a few miles on my behalf. His pain would be temporary, mine… not so much. This felt like a great partnership to me. I was still greatly involved in the process of educating others about Migraine, advocating about the need for more research and funding as well as supporting Dave on race day, but I didn’t have to physically run myself.

Miles for Migraine is continuing to expand the number of cities that they are holding their events in. In the meantime, don’t be held back. If there is no event in your area, make your own Virtual event. If you aren’t up for your own run or walk, ask a friend or relative if they would be willing to do an event on your behalf.

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By Dr. William B. Young

Stigma imposes a huge penalty in the everyday lives of patients with migraine. It increases social isolation and causes adverse consequences to self-esteem and mood. Stigmatized diseases get less research funding, and payers are less likely to pay for the treatment of stigmatized diseases.
In order to reverse the stigma of migraine we need to understand why it exists. I believe there are three distinct reasons it exist – they are independent, but feed on one another. Here are the three reasons:

Invisibility

In general people with migraine don’t seem obviously sick, except to people who know them very well. To strangers, employers, and casual acquaintances, the person with migraine does not seem particularly ill. The pain, sensory abnormalities, dizziness and brain fog (to name a few symptoms) could be extreme, and no one would be the wiser. But to the ones who know them very well — they know! An observant husband might tell a wife: “you’re a six (out of ten) aren’t you?” And they are probably right. Sometimes the loved one will know there is a headache, even before the patient has registered it for themselves. But for the rest of the world, it is hard to empathize with a thing they can’t see.

Ignorance of the person with mild migraine

How often is the person with mild migraine dismissive of the one who has it much worse? How often has someone with severe, life altering migraine, heard a version of: “I don’t understand, when I have migraine and I take 2 excedrin and an espresso, and I’m fine?” This is outrageous. Imagine the person who had a lumpectomy, no radiation, or chemo, and was cured telling the woman with metastatic breast cancer in her bones and liver that “breast cancer isn’t so bad.”

Nasty negative migraine meme

A meme is an idea that is transmitted from one mind to another, competing for space in the brain of the person who carries it. According to Catherine Foxhall, the world’s foremost historian of migraine, this negative perception began in the late 1700s and has persisted since. For her own excellent explanation, I refer you to the brief article available at here. In short, before this historical period, migraine was treated like any other disease. Treatments were not good, but migraine was not looked down upon. Then, rather abruptly, people with migraine were represented as privileged, self-absorbed individuals, who used their migraine as an excuse to keep from completing their social duties. The doctors who took care of them were also ridiculed as out of touch, incompetent practitioners who encouraged their patients’ neurotic tendencies. A negative, feminized view of the patient with migraine has persisted since, as outlined by Joanna Kempner’s excellent book “Not Tonight”.

A proposal
So how do we approach these ideas? Let me propose a different strategy for situations driven by each of these reasons:

Reason 1:
For people who just don’t see, I suggest reasoned education. Most people can learn about the invisibility of migraine. Their empathy can be engaged – they can get it. Teach them. Tell them about the individual struggle and also how common it is for migraine to lead to lost careers and withered social connections.

Reason 2:
For people with mild migraine who denigrate those with severe migraine, I would take a sharper approach. While it is true that many do have mild migraine (and it is helpful to acknowledge this because migraine has a wide spectrum of severity and treatability), this is a crime of commission, not of omission. It is too easy for such people to sink back into their own more trivial experience. I suspect a good, memorable challenge to their assumptions is indicated. The breast cancer example might work. Repeat as necessary.

Reason 3:
Against the evil meme, we need a truer, more heroic meme. We need to show how people with severe or daily migraine struggle on, doing amazing things, working until every last ounce of strength and energy is expended, and smiling and carrying on in social situations that magnify their pain and set them back for hours, days, or weeks. Only a new and positive meme can replace the brain space occupied by these negative perceptions that have plagued persons with migraine for centuries. There are millions of quiet and hidden migraine heroes – when they are seen and heard, this ugly lie about their disease and their character will melt away.

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By Dr. William B. Young

Recently I was trying to cajole some headache doctors I know to start a Miles for Migraine walk/run in their communities. They said to me that they wouldn’t be successful at getting many patients to participate because—and I paraphrase—“of the biology of the disease: migraine itself makes it so patients won’t go out and face the sun, the noise, and the movement — they are driven to turn away from things, not to do things.” The argument why patients won’t send family is, “they have to ask family to help out when migraine is bad and they can’t do something; they’re not going to want to ask for more from their families.”

Shouldn’t migraine research be fought for?

This stopped me, for a while. What if they’re right? Is it a fool’s errand to try and motivate patients to stand up and demand that society treat the 6th most disabling disease on the planet like it’s not the least deserving of all medical conditions? Is it acceptable to expect doctors, pharmaceutical companies, and device-makers to lobby for migraine to be taken seriously without a patient movement?

I’ve gotten used to begging, cajoling, and wheedling my patients with migraine to come out to a Miles for Migraine walk/run, to bring their family members, or at least “send an avatar.” I like showing patients that I find their disease worth fighting for, and not just with pills, injections, devices, and behavioral treatments. These walk/runs create public awareness, fund research, and fund training for future headache doctors. But it is the just showing up part that is most important – demonstrating that you find this to be an important disease.

We are louder in numbers

History shows us that disease perception changes only when the people affected and/or their families stand up and fuel this change. This happened for AIDS, breast cancer, multiple sclerosis, and autism. When these patients and their families joined together in participatory activities that garnered attention to their illness, they undermined the stigma and acquired resources that revolutionized the treatment of these diseases.

I know that people who have migraine have the strength, perseverance, character, and wit to manage their complex illness and make the most of their condition. Even if they don’t yet see how society has conspired to delegitimize their burden and ridicule their efforts to cope with their condition, people with migraine show their heroism every day when they drag themselves to work despite their pain; when they smile for their children despite feeling like a used dishrag; when they suffer through their worst, untreated migraine, so they can save their best medication to preserve their job or meet their most important social obligation. Miles for Migraine is about validating this struggle.

Seizing the opportunity together

I know that many of you feel that you have no heroism left inside of you, and that you cannot spend your limited function capital on something as unjustifiable as a walk. I know that some of you who are not so bad off don’t want to contemplate that your disease might worsen and might render your condition serious enough to justify a walk for you. But it might. If not you, it might for your children or siblings, whose dose of migraine genes might just be a little larger than yours.

Opportunity to change how a disease is viewed comes in waves. Right now opportunity is rising, and over the next few years it will crest. Awareness of the stigma of migraine has grown, and people are articulating ways to challenge it. Scientific interest in migraine is growing as new treatments and devices are approaching general availability. New research is showing behavioral treatments can remold brain architecture and stabilize damaged pain structures, so interest is rising. Let us take this opportunity to perform a small, additional act of heroism – to congregate with others who have migraine, and with the doctors, nurses, scientists, and well-wishers who care so much. I know that it’s more difficult to go to a participatory activity when you have migraine, but bring your sunglasses, earplugs, and a folding chair if you need it. Being present is what’s important. If you don’t validate you struggle, no policy-maker ever will, least of all your insurance company!

So here are some web sites to help you stand up and do something active against migraine, and for yourself:
Runnin’ for Research: http://www.runnin4research.org/upcoming-races.html
Miles for Migraine: http://milesformigraine.org/race-series/
Association of Migraine Disorders: http://migrainedisorders.org/get-involved
Migraine Research Foundation: http://migraineresearchfoundation.org/take-action/fundraise-for-mrf/

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