If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why?.
Who would you explain migraine disease to?
I suppose the first person who comes to mind is the manager at the office I recently worked at prior to being transferred last month. I think the reason I would choose her is that I still harbor a great deal of frustration and anger over how she treated me the past seven years.
I want you to understand my migraines were severe. I had presenteeism. And absenteeism due to them. But through the work environment I endured, they became much more severe. And I became severely depressed.
It would be great to not only finally get her to understand the complexity of chronic migraines and the treatment of them but for her to understand the profound impact her treatment caused to me emotionally and mentally. There was a time I felt confident I could have some semblance of a career while coping with fibromyalgia and chronic migraines, with the hope the chronic migraines would eventually be managed somewhat.
Anyway, I had no idea the stress and amount of guilt an employer could cause in addition to the stress and guilt we already endure such that my confidence and self-worth was slowly destroyed. Took five years but she did it. In many ways, my self-worth has yet to recover. And it will likely take years for it to. Made me feel guilty about being ill and somehow to blame for it. She literally told me I was letting down my customers, my co-workers, and myself… as though I had a choice. Not to mention the threats of being fired or laid off or demoted, mind you I was demoted a few times without being asked if it would be better for me and purely for my ‘health’.
Over the years when medications failed or doctors took me off triptans she would get worse and paint me into a corner with threats. It is a full-time position, in office, no accommodation available… and so on. Accommodation wasn’t available for someone without a ‘physical disability’ she told me once. She would constantly mention my sick days, even though they were acceptable to the insurance company. She treated me like I had a choice about those sick days like I was just not coming into work for the fun of it. Like I didn’t work every damn day with a migraine as it was and it had to be a significantly worse one for me to miss work. Usually, my doctors would put me on short-term leave when things got really bad, but that never did a damn thing and made my work situation worse.
Point is, five years into my job she said if I missed one more day I would be demoted and that position I knew would be worse for my migraines and easier to lay me off and I knew if I went on short-term leave things would get significantly worse… so I tried to tough it out. And then came a status migraine, which lasted a long time, I ended up not being able to sleep at all and got really emotionally stressed. One thing led to another and I tried to kill myself. I didn’t succeed (obviously) and it led to another short-term leave of absence but nothing else changed. It was a profoundly significant event for me, but literally, nothing changed work wise or medical treatment wise. It was a horrible realization that not even that impacts treatment. I became pretty hopeless and depressed after that.
So yeah, I’d like to invite her to tea and have a little chat about how to treat people with disabilities and consequences of your actions. Not to say she is to blame for anything, only that she does not comprehend how her treatment of people has consequences. Her misconceptions about chronic migraines led her to believe to some degree my condition was, in fact, my fault and that if only I did ‘whatever’ I wouldn’t have the problem.
Over the years she has given me a great deal of ‘advice’ on what I should do by the way. She also told me once that I should stop taking all my medication because maybe being on it all was the problem even though all those medications make it possible for me to work 90% of the time with migraines… because you can’t work with acute migraines all the time now can you? Those meds do something just not enough. She told me to cut my hair. To get rid of my cats. And using her fake sympathy to then make me feel guilty about being sick is a loathsome thing to do.
I get that corporations see us as a liability and they will try to get rid of us, sometimes using horrible tactics to do so, but if they want to use emotional warfare then I would want them to know every aspect of chronic migraines from all the neurological aura symptoms, to how many migraines I get, to how crippled I am by the pain, to how many medications I have to take and how very carefully I have to balance them and to how much pain I just have to deal with because I can’t take too much medication… and most definitely I would like them to know how their threats and attitude can affect my fragile coping strategies when I’m battling an out of control status migraine. A good work environment, a little accommodation, some motivation and just some simple empathy when you are talking to someone who is suffering a great deal is just worth so damn much. When I think about how much power she had over me and how horrible she made me feel about myself I cringe. I felt like such a horrible person every time I called in sick for a migraine. Like I was failing everybody and I always felt such anxiety about going to work the next day because of it.
I would want her to understand the entire impact of chronic migraines and, also, her impact on me by being so manipulative. Hopefully then another like me would not suffer so under her management, and maybe, just maybe we could work with the company to do a little something about their lack of policy in regards to communicating and assisting people with invisible disabilities and their lack of showing managers how to communicate with employees with such conditions. It is hard enough to work full time in this much pain, we don’t need such people to make it a harder burden than it already is.
Other posts on working with chronic pain
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com. https://w.atcontent.com/-/79sx9sjQImL/nikki.albert/4wCnT5IGAt0.text/Panel/Autocheck