The Disparity in Attention for Headache Disorders?

My friend and patient advocate, Bray Patrick-Lake (also President and CEO of The PFO Research Foundation), wrote the following article for the AHDA's HeadNotes, a blog of sorts for members of the AHDA: Why the Disparity in Attention and Support of Migraine and Headache Disorders? (It's a very good article, please go read it!)

Why, indeed? My personal experience over the past 5 years has been thus: when confronted with information and the truth about Migraine disease, people, most especially - those non-empowered patients - get angry. I recently left a Migraine-based "support" group because of the complaining within, and the lack of listening that the sufferers were doing. Should I have left that group? Should I have continued using my time entreating those not willing to listen to me that they needed to look to the next day with positivity and hope? Should I have continued to urge particular members to get counseling? How do you stand up to someone who screams at you over a virtual messenger that "you don't live my life so you don't get it", when in fact, I do get it because I also live that life? I mean, the particulars of my life are not the same as others', but I also live a life with chronic Migraine that is also filled with its own particular conundrums and stressors. So yes, I do get it. Life is hard. Don't ever walk on anyone else, even though it's so easy to do on the internet.

Did I give up on these individuals too easily? When faced with a post that is radically different in viewpoint, i.e., "we have Migraine because of Eve's curse and the Biblical standard that women will suffer throughout time and their own lives because she ate from that tree", do you let it go or do you stand up and say, "that's kind of funny, considering men get Migraines too." In my opinion, I did not give up. One can say whatever they want however long, but some people, including sufferers, are not going to listen. You would be, to take a familiar phrase, talking until you are blue in the face. So what do we do?

When confronted by the suggestion that one might, for instance, donate money to particular organizations, sufferers get defensive. I'm one of those sufferers and I will honestly admit it. I get upset being asked for money because in my mind, I am paying for many medications and I am trying to keep my home. My monthly budget is very tight, especially so since I now make regular 4-hour trips to see my Migraine specialist and I cannot work full-time. Many other sufferers are on disability, or have lost their jobs, and who are barely scraping by...is it fair to ask these individuals to donate money when they are barely keeping their heads above water and their reality is not one of financial freedom? I'm conflicted on this point. I'm at the point in this year where I can begin to donate to organizations again, but in March, I was not in any position whatsoever to do so. I have donated, thrice since I have been able to get back on my feet, and I will be donating again and again as I can. But I understand that many people do not have the funds to donate, and I cannot say with any certainty that I can lay blame at their feet. Are there other ways for sufferers to contribute? Absolutely. Two weeks after being hospitalized for suicidal thoughts I was giving my time as a volunteer at one of the NHF's conferences. After that, I participated in the Headache on the Hill event. More recently, I again volunteered at a NHF event. If a sufferer cannot donate time or money, there is always the option of educating the public-at-large, by joining one of the many truly wonderful, informational websites I have listed to the side of my blog, and educating oneself in order to pass the information along.

That being said, I am not the only one in my social circle who suffers from Migraines and other headaches. However, I seem to be the only one who has a vested interest in the topic and in advocacy. Some people simply do not respond to advocacy efforts because Migraine is a tiny part of their life. They might have one Migraine a month, or maybe three. They might lose a few days here and there, but other than that, Migraine means nothing to them. They do not need to worry about prescription medications because they may be able to manage their Migraines with an Excedrin and a Coke, or they've discovered that their triggers are wholly manageable. If there are 37 million migraineurs in the United States, how many of these individuals are chronic and how many of them have a migraine once a year to once or twice a month? There is a huge difference between the chronic migraineur and the episodic one, and if Migraine is not a huge disruptor to one's life, then one is less likely to champion the cause. What we hear on the internet and the forums are people who are suffering almost daily. We hear sometimes of the individuals who have their migraines under control, but we almost never hear from the people who experience Migraine rarely, and those who we do hear from? They sometimes ask why the chronic sufferers won't just take an Excedrin and stop worrying about it, or they blame the sufferer or they dispense advice that is unacceptable because they are uninformed. Some will offer sympathy. But none of them, and I mean none of them, will support or encourage advocacy for their fellow migraineurs. It makes me at once angry, yet understanding. Please, let us not even talk of the individuals who do not suffer Migraine yet see it everyday - employers, friends, family members - who will not lift a finger to help their kin, much less an organization dedicated to improving lives of sufferers.

Also important to the cause of Migraine is signing up for the AHDA's email alerts. These alerts are not often, and they expire quickly, but when prompted, the email recipient signs their name to an alert which is then passed on to the Representatives and Senators of said recipient's state. I did not sign the last one, I'll admit that. I do not remember receiving the email or it slipped past me unnoticed. It went by that quickly. Which is a reminder, I will have to sign up using the one email account I get notices for immediately since it is now linked to my Droid phone. Sometimes I am discouraged by signing and sending off an alert to others whom I know won't sign it. I try, but get told "no, I didn't sign it, I was busy" when I ask them if they received it. Well, me too, but I found time to send previous alerts. I'm ashamed I didn't sign the last one.

Another problem I would like to point out is the lack of guidance within the Migraine community, and I may come under fire for my opinion, but I am going to be honest and I'm not terribly concerned with having an unpopular opinion here (which I hardly, if ever, am). I try my best at educating and advocacy, but there are hardly any individuals openly and warmly fostering care or support for those individuals who are willing to put forth time and effort. And by care and support, I don't mean pity or directions to turn to because someone is suffering a disease. What I mean, is that we should be supporting each other in this effort, fostering and nurturing the ideas and information towards one another and the community of sufferers we are trying to reach. Too many times I have seen one of us standing on our own, lacking guidance, with no group cohesiveness and no room for personal growth as an individual with differing opinions. What I have seen and received as well plenty of times is a lack of regards to the other advocate's efforts. If we cannot foster a healthy, mutually rewarding, educational and guided environment within the Migraine advocacy effort, then how are we ever going to convince other people that our cause is worthwhile? No matter how big the contribution or the time devoted to the issue of Migraine, we are all important in the fight. It is not just one individual's mission, it is millions of individuals' mission. We must build our bridges together, even if we are coming at each other from different angles.