Being Told "It's Just A Headache"
This is an open letter to employers/managers who make their migraine-suffering employees' lives hell...
Being told "it's just a headache"
Chronic migraine is defined as 15 or more migraines a month. Often one migraine just bleeds into the next and life is just one miserable hour on top of another in an endless march of pain-filled days and nights with little relief, often not even sleep.
I can personally speak to this subject because I have suffered chronic (familial hemiplegic) migraine for over 45 years. At one point I had no pain-free days for nearly 5 years; just varying levels of pain combined with varying levels of light/noise/smell/nausea tolerance.
Chronic migraine sufferers count the days in a year that they DON'T have one and they're lucky if they get to use all their fingers to do it. If there's a pain-free day they generally spend it either trying to rest to gather strength, or exhausting themselves trying to catch up on all the things that need to be done before the next attack that they know is coming. Migraine is debilitating. It steals your life. Just because it’s invisible, doesn't mean it isn't happening.
And then there's work
If having your life flattened almost daily by a steam roller of excruciating pain and other fun issues like vomiting (or even suffering stroke-like symptoms) isn't enough, employees often have the stress of having their job threatened due to poor productivity and/or absenteeism, by managers who because they can't SEE the problem, don't believe an employee is actually ill. Most employers make accommodations for employees with visible or documented illnesses/disabilities but don't have even compassion, never mind tolerance or accommodation, for the invisible (and hard to document) illnesses - like migraine.
Sure, there are laws like The Family and Medical Leave Act of 1993 that “entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons”. That works great for people having children, recovering from a heart attack, dealing with cancer treatment, etc... Those are visible or easily documented and an employer would be in a world of hurt if they fired someone for taking days off to have chemo because everybody knows chemo makes you sick. But many employees with invisible illnesses are afraid to apply for FMLA because they fear (know) they will be penalized in some other fashion and some trumped-up reason will be found to get rid of them anyway.
The FMLA fear
A migraine employee who feels threatened enough (and has the guts) to apply for and is granted FMLA might then be afraid to use it because the manager/employer adds stress to the fear and pressure by asking (This really did happen to someone I know) “how do I know you aren’t just taking the day off?” Yes I know they're not supposed to ask - but many do.
I can see that misuse of FMLA leave is a valid concern but there is considerable medical documentation to go along with an FMLA application and enough stigma attached to "invisible illness" circumstances that it would just be stupid to misuse it.
The stress factor
So… these managers, while attempting to correct the productivity/absenteeism issue using sweatshop tactics (like writing up an employee and telling them if they are absent one more time in the next X number of days they could be terminated), compound the problem instead. Adding stress by threatening their employee’s livelihood will only make the problem worse. Stress aggravates migraine. Having your job threatened regularly, creates stress.
In my experience, and knowing many other migraine sufferers, we are usually very dedicated and don’t want to miss work. We don't want to miss work because, well, one reason is that we don’t want to be thought of as weak, we know there will be twice as much to do when we get back (more stress), we feel we are letting down our co-workers, and because some co-workers (and some managers) will talk about us behind our backs.
I was recently made aware of a manager commenting to an employee that another employee (wrong on so many levels) was absent due to “another convenient migraine." I know who she is and I want to take a jackhammer to her head and stab her in the eye repeatedly with an ice pick and then ask her how "convenient" that feels. Because, that's what a migraine feels like.
"Isn't there medicine for that?"
Yes, there are medications but they don't always work for everyone and some of the side effects are horrible. Examples include plain old regular headaches, weight gain, medication-induced aphasia, or your hair falling out. Yup, that’s helpful. Also, there are different kinds of migraines and some just don't respond to any current medication out there or they respond one day but not the next. Some meds do work but only for a few months and then all you have is the memory of what "normal" life is like.
That leaves us with pain medication, usually, some sort of narcotic, which just dulls the pain but doesn't stop/treat the actual migraine or any of its other symptoms. In some cases, they can make you vomit (like you need any help vomiting with a migraine) but usually helps enough that you can at least function - sort of.
But you can't drive to work on pain meds because they make you goofy. You can't take them if you make it to work because they make you goofy (and you make mistakes and get written up or even accused of being drunk or high). So you try to not take them and it gets worse and worse until they don't work anyway and you have to go to the ER.
That’s where they just dose you with something that knocks you out and leaves you on a bed in the hallway drooling for 4 hours while strangers are walking by. Then you wake up and the migraine is still there. The hospital papers might satisfy your employer for a bit, but you probably could have been treated at home (and been miserable on your own couch) and not taken up a bed needed by someone who had a car accident (maybe caused by them driving to work on pain meds because if they don't go to work, they fear they’ll be fired?).
A truly invisible illness
I don't know what my managers over the years thought I was doing when I called in because of migraine. But from some comments that were made, apparently, some of them thought I was enjoying a lovely rest day. There is no rest with migraine. You can't rest when the pounding keeps you awake and you're pretty much convinced your head is going to explode and you kinda wish it would because then the pain would stop.
Employers don't see that you are spending your lovely rest day sitting (no laying down, even the pillow, hurts too much) on the bathroom floor waiting to throw up again. They don't see the big black spot in your vision that you can't see around well enough to drive to work (where even if you do make it there without incident, you'll be completely ineffective). They don't see that your arm and leg are numb, that you can't find your words, that your speech is slurred and you can't think around the pain clear enough to add 2+2 never mind do your job properly.
They don't understand that if you got to work you wouldn't be able to see because the fluorescent light has suddenly increased to a brightness that rivals the sun. They don't hear the sound of clicking computer keys that have become a thumping bass drum so loud they rattle your vision. Because they can't see/hear it doesn't make it not be happening.
So we mostly yank up our big girl panties and power through whenever possible. We don't get good non-work life. Chronic migraine sucks your life away. You work and go home to try to get better enough to go back the next day. You miss out on so much that you could have enjoyed, shared, accomplished, and produced if you weren't sitting home in dark quiet with helpless tears running down your cheeks even though it hurts worse when you cry but you can't not cry.
But… "it's just a headache."
My dark room: