In our last blog post we invited our readers to share their awkward conversations about being sick. We got a lot of great responses, and in this post we’re going to show you the good, the bad, and the ugly.
First up: The Good! (or at least the not bad!)
This response comes from Maddi, a friend of mine from high school. She shares some great insight on what it’s like to be backed up by a program at school specifically for invisible illness, much like the one I discussed on one of my first posts. She does not have a blog herself, but she should. She does have very inspiring facebook statuses about dealing with illness. She shares some wisdom here:
“I too have Crhon’s Disease. Well, okay, let me just list off everything I have, since this is (what I feel like) a safe place. I have Crhon’s Disease along with Irratable Bowel Syndrom (so basically, the second I eat something bad, it bugs all the way through my digestive tract. Fun stuff), Artritis from Crohn’s, Endometriosis, Generalized Anxiety Disorder, and Depression (which, as anyone that is well versed with chronic illnesses knows, mental disorders and physical disorders typically can go hand in hand. I mean how can you NOT get derpesssed?)
Honestly, when it comes to employers, I don’t always tell them. I feel like it’s a need to know basis, and I don’t like to get treated differently. That being said, if my absences become frequent or it I have to go home sick, in the case of an employer, I generally will tell them I have a chronic illness. By law, they can’t ask you more than that. Maybe I’m overly cautious, but I definitely don’t want an employer to treat me differently because I’m chronically ill.
With Professors, however, it is a completely different story. I am fortunate to go to a school that has a disability policy. Through my disability adviser, i am given a University document that basically tells the professor these things: I need to have the ability to make up missed work, I have an absence accommodation (so I can’t fail a class at the maximum absences), I have preferential seating (near the door to go to the bathroom), I may leave class if I need to, and I have the ability to make up missed work without consequences. This is SUPER handy. However, if the professor is nice, I’ll generally tell them what I have when I begin to rack up absences.
I have had some professors who are not willing to work with me on this. In fact, this semester I took a class offered by the head of the English Department. The lady was all high and mighty and wasn’t willing to work with me on my participation grade, which was 10% of my grade, which doesn’t sound like much, but the class was insanely hard so I knew I needed that 10%. She managed to abide by all of the rules with what she was doing to me, and no one was willing to tell her what she was doing was wrong because she was the head of the department. I ended up having to drop the class because, honestly, at that point, I had completely lost my respect for her.
I hope my insight has helped someone out!”
Next up, we have THE BAD.
This story comes from Marnie, author of therevertedbutterfly.blogspot.com. She prefaces this story with a disclaimer: “This was years ago and a lot has changed.” While Marnie’s experience with endometriosis might be different than the modern treatment, the emotions and judgments have, unfortunately, not changed much.
“After having every surgery & procedure (including self injections into my stomach for 6 months) I had a complete hysterectomy. In passing as he was the local dr in our small town he said before I had the surgery (though he wasn’t my dr) that ‘you will fall in love this first semester of college & no man will marry you because you can’t have kids). I was strong enough to know to listen to my body. I had severe endometriosis & I knew something wasn’t right…Always trust what your body is telling you.”
You can read Marnie’s full post here.
And now… THE UGLY.
This story comes to us from Tosha at BottledTime, one of my very favorite blogs on dealing with invisible illness. Seriously, go read it. You won’t regret it! Tosha’s just about the sweetest person you could hope to meet, but today she shares with us the ugly side of being sick and not getting the help and compassion you need.
“I honestly cannot remember how many times I was asked if I was pregnant. My answer of, “No,” to this very repetitive comment 
was usually met with a, “Sure,” and “knowing look.” This experience happened with other students, professors, family, and what I feel was the most appalling, the campus nurse. I had gone to see her because I was urinating essentially (shy readers look away) straight blood. She asked if I was pregnant. When I gave her my “sample” and she refused to submit it because she said there was no way that that much blood was in my urine & I had contaminated the sample with vaginal bleeding. By the time I made it to a doctor outside of the school, and they tested my urine, they were shocked that I had not had it tested sooner and that I was not lying in a hospital bed at that very moment.
The other incident I’ll share happened with my employer. I was going through the murky depths of trying to get a correct diagnosis (most people with chronic illness take years to get properly diagnoses – partly because of experiences like the one I just mentioned). To put it mildly, things were not good. My supervisor, who encouraged us to have an open conversation with him, just wanted to know when it was going to be “fixed.” Let’s just say I didn’t feel open telling him that I had no idea (and later that it never would be). Instead I felt pressured to drop to part time so I wouldn’t cost the business as much money. And I learned a hard lesson about being open.
Unfortunately, this is all too common in the workplace. I actually just discovered the podcast Sick with Success which talks about the cost of chronic illness in the work place (which is unavoidable & more prevalent than is realized), how the air that’s created costs companies more money, and that there are better ways to utilize those with chronic illness to actually improve productivity & save companies money – starting with educating management & employees. Thought I’d share the link with you since it’s right on point with your topic: http://itunes.apple.com/ca/podcast/sick-with-success/id521131715“
Sharing your illness with anyone, be it employers, friends, professors, or even doctors, requires a great leap of faith. We know going in to it that most people have no idea what it’s like to be sick and they have no idea what we need. Some people choose to keep it on the down low, or as Maddie put it “on a need to know basis.” Others (like myself) are too eager to share and not tactful enough. Still, as Tosha and Marnie show, even the most deft use of tact cannot deflect ignorant people (or people who are just plain jerks).
I leave you with one last story, shared by the amaaazing Rosa Fontanna, who does not have a blog but who wrote a wonderful novel that “exposes the world of Crohn’s disease and its prognosis, treatments, and concerns through humor, science, and the deep insights of its youthful characters.” You can read more about her novel, The Directive, here.
Rosa writes:
“I’ve had similar experiences and sympathize with ya! I have Crohn’s disease, and when it comes to discussing it with people, I find that more generalized opening statements traumatize newcomers less, though I can’t help those who’ve heard of the disease because, “Oh hey, my friend’s aunt had that or something,” jump to conclusions, and bellow, “OHMYGODDDD YOU MEAN YOU POOP ALL THE TIME?!”
It’s like, honestly, people? Guys, you should be more ashamed of your browser histories than of your bodily functions. Guess which one’s been around longer? And guess which one’s normal?
As a cashier at a grocery store, I am required to stand in one spot for eight hours a day, with two breaks and a lunch. I finally got around to telling my boss about it a few months after working there, because I’d started getting sicker. I’m very lucky because she was incredibly understanding, but I’m willing to give myself some credit here, too, because I didn’t lead with: “Well for starters, I have to poop a lot.” Instead, I helped her understand by saying, “Ever heard of lupus?”
*slow nod*
“Well, it’s a bit like that.”
Which caused her to prompt me for more information. It got her interested without scaring her away. Makes a big difference!
As for jerks, I’m happy to say I haven’t encountered any. I’m sure the day will come when someone will try to let their ignorance get to me, but honestly, the way I see it, they don’t know any better. I’m the smarter one in that particular situation and that suits me just fine.
I say, fight the stigma. Because really, everyone perpetuates it with ignorance. For those who don’t have an invisible illness, LISTEN. For those who do have an invisible illness, don’t pass off your disease as the flu or a tummy-ache because everyone else will be conditioned to assume that’s all the disease supposedly is. Finally, by all means, tell the truth about your respective illness and know that you’re not alone!”
I couldn’t have said it better myself.
