I’ve been in the workforce for nearly 25 years since I graduated from college in 1987. Minus a few months here or there when I was under employed or searching for a new position, I have always been gainfully employed. In fact, I have been at my current position working at the University of Massachusetts support staff Labor Union for nearly 18 years. Once a half-time position, I always had another half-time position at University to created full-time employment.
Two years ago, in 2010, the Union was able to extend more hours to me and create a 30 hour a week position. Although I had been diagnosed as having chronic migraine in 2008, it was a few months prior to this time that my once semi-manageable migraine condition spiraled out of control and began to disrupt my ability to function as a complete and normal human being. I had just come off a partial leave from my other half-time position, so increasing my Union job hours to 30 hours a week job and having only ONE job after 16 years of 2 half-time positions was ideal. The universe brought me what I needed at just the right moment!!
I am of the mind that no one should have to work a 40 hours workweek. Shit, not one should work over 20 hours a week unless they are working for themselves creating art or doing work for self sustenance. And who came up with the insanity of the 5 day workweek? What about a more gentle 3 or 4 days of work a week? Anyway, I digress.
For someone like me who suffers from chronic migraine (definition: 15 or more days per month of migraine lasting at least 4 hours), 30 hours a week is still a struggle, though I do manage to come into work on most days a month. I pride myself on being really good at my job. I love helping my fellow union members, I am very thorough and organized, and I find challenge and meaning in doing union work. I know that the constant pain I experience affects my ability. The medications and migraines make my thinking more fuzzy. A lot of the time, I work through the pain and still manage to do an above average job, by some miracle. Or is it because I am a perfectionist?
For me, since this illness has become worse and more chronic in the past 6 months and has not responded to treatments, my struggle to keep working a normal schedule and to function in the workplace has intensified. How many days in a row can I legitimately go home sick without jeopardizing my job? I ask this rhetorically because I know the laws. I work for a Labor Union. I counsel union members about FMLA (Family Medical Leave Act) and the ADA (Americans With Disabilities Act) and though I don’t know these laws inside out, I know enough to know what my rights are as a union member.
But it is a slippery slope because as an employee you have to be able to do your job, don’t you? But as someone with a disabling medical condition that I have no control over, don’t I have protection and rights? These are legal questions that as chronic migraineurs we need to be asking. We also need to be much more open about our suffering so that we demand our rights and accommodations in the workplace. Accommodations can include: removal of fluorescent lights, no-fragrance policies, computer glare screens, air purifiers, flexible schedules, noise reduction where possible and more. Some of these things are works in progress, especially the exposure to scents and fragrances, as that continues to be a problem in my workplace.
For me, something had to give. So my Dr. and I decided that while I undergo treatment with Botox (more on that in my next post…), I am to work no more than 20 hours per week. The FMLA paperwork has been filed and as of this week, I have reduced my hours to 20 per week.
Part of this journey of chronic migraines is learning how to deal with others regarding my migraines and education is part of this. This is paramount when it comes to the workplace because there are still so many misconceptions when it comes to migraine. I feel like a broken record every day explaining to my boss (who is also a friend) exactly what I am dealing with. I feel like a broken record explaining chronic migraine to my friends and family too.
All of this contemplation about work and migraines, led me to research the issue and I found some very interesting information. For example, in a 2002 survey conducted by Harris Polls and Pfizer, of 3000 American Migraineurs surveyed, 66% “toughed it out” while continuing to work despite the debilitating symptoms of their migraine attacks. For chronic sufferers, imagine toughing it out on a daily basis! Here is a link to the poll summary: http://headaches.about.com/library/weekly/aa-harris-wkplace.htm
According to surveys done by the Migraine Trust, migraines are not taken seriously in the workplace, with just 5 percent believing their boss understands the severity and impact of their migraines. One third of migraine sufferers believed they faced difficulties or discrimination at work because of their condition. Although the Migraine Trust survey was done in the U.K., I would think we would see similar results here in the U.S.
Clearly, we have a long way to go in terms of education and changing the climate in the workplace when it comes to migraine. As migraineurs, we need to be open and clear about our condition, what our needs are and to be authentic about our suffering. This doesn’t mean we have to be negative or whiny. In fact, the most positive step we can take in facing our chronic illness, is to talk about it, to not “fake” it and to be clear to our employers about accommodating our disability in the workplace.