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By now, you all pretty much know that I advocate giving people in your lives printed information and/or websites to read about IC so that they can at least understand that it is a real disease. However, we know that sometimes people read the stuff and take it with a grain of salt... and then still treat us like we're lazy jerks even though our chronic illness is what is limiting us, not lack of ambition.
You all probably know, too, that my workplace has become rather toxic in the last year or so, and I am pretty fed up with it. So much so that I am contemplating getting out of laboratory science and changing to a career in science writing and/or teaching instead. Much of this is because these days in science, supervisors are intolerant of those of us who do not work 100 hour weeks (staying until 9 or 10pm, coming in both Saturday and Sunday, etc). Unfortunately, due to IC, fibromyalgia, MPS, migraines, and possible chronic fatigue syndrome, I am unable to do this kind of thing anymore -- and I informed my boss about that in the beginning, when I started working here. I also gave him some info on IC at the time, and in the beginning, he was quite understanding.
As time passed however, and I "didn't look sick" a lot of the time, I think the gravity of the situation became lost on him, and then I ended up being reprimanded for working what most people would consider a very full week (40-50 hours), which was frustrating. For a while, I tried to work longer hours and didn't leave the lab until at least 8pm for two weeks -- but I became seriously ill after doing that. In fact, I've never mentioned this, but the fatigue caused by stress on my fibro/CFS/IC during that time resulted in me falling asleep at the wheel of my car -- luckily, it was near our home out in the boonies, and I was driving slowly, so I just drifted slowly into a corn field and came gently to a stop against some corn stalks.
That made me realize that if it had happened earlier in my commute, I could have killed myself, or worse, someone else. It also made me realize that working those kinds of hours was absolutely impossible, so I cut back... of course, that led to another reprimand and comments that I did not get enough done, even though I busted my butt during the hours I WAS able to be here and only called in sick one or two days despite feeling horrible. I ignored the reprimands that time, though, and just kept working the way I was able... there is nothing else I can do besides that and look for a different job in a different form of science.
Finally, my boss began acting very cold to me and then scheduled a meeting with me for this morning a week ago. In the meantime, I found some more articles on IC... ones that stressed how intense the pain was, and how 67% of those with IC are not able to work full-time (they either work part-time or need to be on disability). Speaking of disability, I found another article stating the fact that IC is indeed covered under the ADA and is considered a disability. I emailed him the links with just a simple "FYI -- the newest information about interstitial cystitis" and then just gathered up all my work to prepare for the meeting (while tending to labwork, trying to go to the development classes he wants me to go to, and dealing with at least 5-6 meetings a week....)
Anyway, when I went in, he was pretty grumpy at first but I presented my stuff to him and there was really nothing to yell about so he kind of sat back in his chair, looked ****** that his moment to yell didn't happen for a sec, and then calmed down.
And then he actually said, "You know, I guess I didn't really realize how much of a toll this IC takes on someone's health. I feel kind of bad for getting upset when this disease really does set limits on you."
Unbelieveable! We also discussed the fact that I am considering changing careers to something other than lab work, and he was kind of upset about it and kept saying, "Well I hope you stay in science in some way or another because you're a great thinker..."
We shall see how long this episode of understanding lasts... but at least I have a period of reprieve coming up that will likely last a month or two. 'Course, dunno if I can say the same about my coworkers, but at the moment most (except for one) are being decent people.
So I guess the moral of the story is -- sometimes it can take repeated doses of IC info to give someone a kick in the pants about it. Maybe a good thing to do with some people in our lives is to send them the newest IC info every now and then, just "for their information" or "because I thought you might be interested."
It stinks that we have to do that though... if I said I had cancer, they'd all understand after that one announcement. But with invisible chronic disease, they need reminders -- another symptom of "You Don't Look Sick" Syndrome, I guess.
You all probably know, too, that my workplace has become rather toxic in the last year or so, and I am pretty fed up with it. So much so that I am contemplating getting out of laboratory science and changing to a career in science writing and/or teaching instead. Much of this is because these days in science, supervisors are intolerant of those of us who do not work 100 hour weeks (staying until 9 or 10pm, coming in both Saturday and Sunday, etc). Unfortunately, due to IC, fibromyalgia, MPS, migraines, and possible chronic fatigue syndrome, I am unable to do this kind of thing anymore -- and I informed my boss about that in the beginning, when I started working here. I also gave him some info on IC at the time, and in the beginning, he was quite understanding.
As time passed however, and I "didn't look sick" a lot of the time, I think the gravity of the situation became lost on him, and then I ended up being reprimanded for working what most people would consider a very full week (40-50 hours), which was frustrating. For a while, I tried to work longer hours and didn't leave the lab until at least 8pm for two weeks -- but I became seriously ill after doing that. In fact, I've never mentioned this, but the fatigue caused by stress on my fibro/CFS/IC during that time resulted in me falling asleep at the wheel of my car -- luckily, it was near our home out in the boonies, and I was driving slowly, so I just drifted slowly into a corn field and came gently to a stop against some corn stalks.
That made me realize that if it had happened earlier in my commute, I could have killed myself, or worse, someone else. It also made me realize that working those kinds of hours was absolutely impossible, so I cut back... of course, that led to another reprimand and comments that I did not get enough done, even though I busted my butt during the hours I WAS able to be here and only called in sick one or two days despite feeling horrible. I ignored the reprimands that time, though, and just kept working the way I was able... there is nothing else I can do besides that and look for a different job in a different form of science.
Finally, my boss began acting very cold to me and then scheduled a meeting with me for this morning a week ago. In the meantime, I found some more articles on IC... ones that stressed how intense the pain was, and how 67% of those with IC are not able to work full-time (they either work part-time or need to be on disability). Speaking of disability, I found another article stating the fact that IC is indeed covered under the ADA and is considered a disability. I emailed him the links with just a simple "FYI -- the newest information about interstitial cystitis" and then just gathered up all my work to prepare for the meeting (while tending to labwork, trying to go to the development classes he wants me to go to, and dealing with at least 5-6 meetings a week....)
Anyway, when I went in, he was pretty grumpy at first but I presented my stuff to him and there was really nothing to yell about so he kind of sat back in his chair, looked ****** that his moment to yell didn't happen for a sec, and then calmed down.
And then he actually said, "You know, I guess I didn't really realize how much of a toll this IC takes on someone's health. I feel kind of bad for getting upset when this disease really does set limits on you."
Unbelieveable! We also discussed the fact that I am considering changing careers to something other than lab work, and he was kind of upset about it and kept saying, "Well I hope you stay in science in some way or another because you're a great thinker..."
We shall see how long this episode of understanding lasts... but at least I have a period of reprieve coming up that will likely last a month or two. 'Course, dunno if I can say the same about my coworkers, but at the moment most (except for one) are being decent people.
So I guess the moral of the story is -- sometimes it can take repeated doses of IC info to give someone a kick in the pants about it. Maybe a good thing to do with some people in our lives is to send them the newest IC info every now and then, just "for their information" or "because I thought you might be interested."
It stinks that we have to do that though... if I said I had cancer, they'd all understand after that one announcement. But with invisible chronic disease, they need reminders -- another symptom of "You Don't Look Sick" Syndrome, I guess.
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