Skip to main content

Advocating Is My Full Time Job


No this isn't an ad for cleaning products or a story on why you too should become a Grove member...

Yes it is a great company blah blah blah.

But that isn't my point today.

I did something new for the entirety of June. As it was Headache and Migraine Awareness month, I made a point to talk about it. I made a point to let others know that this is a serious condition and I suffer from it.

I discovered very quickly that a lot of people out there are in the same boat as I am, or completely understand as they have family or friends with the same condition.

What I also discovered is that talking about it isn't enough.

It is no secret that migraine sufferers know way more about this nightmare than the general public does. It is also no secret that we cringe when people show their ignorance and ableism.

This month was hard.

I missed 1 full day of work and had to leave work on another occasion. Those two days don't even touch on the days off I spent laying on my couch in agonizing pain.

I've barely cooked real meals this month. I'm just now doing laundry for June... it's the 1st of July...

But let's go back to those days of work that I'm mostly inevitably going to miss.

The first day, I simply called out. My boss is a very understanding individual and coverage was good so it wasn't problematic. No questions were asked.

Let's fast forward through the days that I pushed through, counting down the hours until I could wrap my face in icepacks. Fast forward through the mornings where I had to use various pieces of furniture to prop myself, but couldn't leave because eventually the side effects would calm down. Fast forward to the moments I went blind and couldn't see who was standing in front of me. Fast forward through the head collapsed in the break-room, cold water bottle braced against my neck...

I took a stand and said hey, I'm going to be really really sick. We had way too many people working for the lack of customers coming through the door, and if I didn't lay down I'd end up in the ER.

"But you don't look sick" see other blog post for my reactions on that bullshit

I left.

I didn't care that my disease is invisible.

What I care about is what happened shortly after in my absence.

Advocating. On my behalf. One of my coworkers, who has been gracious enough to ask questions and listen and bond with me, without ever questioning how I'm treating my condition... advocated to me. To staff members who thought I was faking it.

My disclosed disability.

Even the staff members who have "sympathized" on days where I've been at work, not feeling great. Didn't believe I was sick.

Sorry. It's chronically ill. But people don't know what chronically ill means.

So I've spent the month advocating for my condition. Making people around me aware of it.

That isn't enough.

A few weeks ago, someone decided to Lysol wipe the entire front desk.

I blatantly lied and said I was allergic to cleaning products. Why?

Because an allergy is taken more seriously than the real explanation of "the chemicals in the Lysol wipes are extremely strong and being exposed to them will trigger a severe migraine"

And here I am. I just purchased cleaning products for work.

Why?

Because yesterday, that same coworker made a sly comment about someone here not liking cleaning products. I again said it was me.

I was told to go some place else.

The chemical smells don't just go away.

So even though my medication that had allowed me to get to work had starting kicking in, the chemicals said screw you and I spent the rest of the day in agonizing pain. I'm still in agonizing pain over 24 hours later...

I don't think a reasonable accommodation is making a company change what cleaning supplies they purchase.

I do however believe that me providing an alternative cleaner to be used when I'm there, is a reasonable accommodation. PS the cleaner is only $4.

So, when I say talking about it isn't enough, I mean it. Now I'm doing something.

Today that something involves buying better cleaning products that won't negatively affect me, which will allow me to be 100% at work.

Headache and Migraine Awareness month may be over, but spreading awareness and working to create change is a constant battle.

A.

Comments

Post a Comment

Popular posts from this blog

It Hurts

To say I feel less than human, is probably a bit of an understatement. But I do. I've been home for a week. I've managed to pretty much lay in bed in agonizing pain the whole time. I had a half-assed attempt to see a friend that resulted in me rushing home as the nausea and aphasia set in. I successfully made it to massage therapy today. Which meant even after sleeping for roughly 2 hours, I got up at 7:30 and sat in traffic for hours to get to a less than expected appointment. Mind you, my previous massage therapist was so wonderful I'm most likely spoiled to other techniques. This lady was late, she sat in the same god awful traffic I did. We spent more time going over the woes of her morning, than we did discussing why I was there and what I hoped to achieve through various massage techniques. The massage room wasn't dimly lit, and even as the massage started, lights were still on. I found this odd, but decided to just keep my eyes closed. Then she started ...
1 comment
Read more

Positive Notes

Here I go mixing things up before things have really taken off. My featured picture is intended to represent the way chronic illnesses and disabilities are only really seen in black and white. My words are intended to fill in all that grey space that is ignored. But today I needed a little color. Because at the end of the day, there's a lot of brightness and light and hope that is key component to my every day battle. So here's a sneak peak and my brand new apartment. I think I've spent the last 4 or 5 years waiting for the day that I had a place of my own. Not because I wanted freedom to do what I pleased or had the same urge to be an adult and do adult things. I in no way want to make anyone think that adulting is fun or recommended for anyone. I didn't want my own place. I needed it. I needed to not have to snarl at my parents for running the garbage disposal or cutting the grass when my head hurt too badly to get out of bed. I couldn't take one more la...
Post a Comment
Read more

Tips and Tricks: Migraines Without Meds

We've all got that one thing that we know will make us be more comfortable, more ourselves. That little something we feel gives us an edge in whatever we're doing. It's that red pair of shoes that'll make us stand out from the crowd because there really isn't a wrong time to wear them, but they certainly aren't expected. It's that lucky pair of socks. It's the green scarf. It's our lucky pen. We want to be comfortable. But, when we've got outside forces controlling a pulsing sensation in our heads, comfort is about as far away as the sun we're desperately trying to avoid. And if you're in my position, reaching for the bottle of pain killers isn't always the right choice. To be completely honest, my pain meds scare me. Every time I get into some trance while I'm on them. Every time I feel myself coming down. Every time the pain sneaks back in. Some days I convince myself that the medication simply wore off and the br...
Post a Comment
Read more