How Do I Put This…?

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 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:

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.

14 thoughts on “How Do I Put This…?

  1. Hi Rachel & readers of Do I Look Sick?
    I discovered this little blog thanks to a friend, your last post was the first one I read, but I skimmed back a few pages and read earlier posts as well, and it got me to thinking about a couple of things. But first, I guess I should introduce myself, my name is Michael, and what invisible illness do I have? None, I am not sick, I am about as healthy as a person can get, sure I could stand to lose a few pounds, get in a bit more exercise, stop consuming so much sugar, but really I have been very lucky, I don’t suffer from any chronic illnesses invisible or otherwise, I don’t even have any allergies, I don’t suffer from hay fever, intolerances, hell I am almost 27 years old and I haven’t even needed to have my appendix, tonsils, wisdom teeth removed, I haven’t had braces or even a broken bone. So why am I writing this post?
    Last week you asked your readers to share their awkward conversations about being sick, the truth is I felt it important to get my experiences or lack thereof out there as well. Your original post and your readers’ comments got me to thinking, these conversations, are not just awkward for the person that is ill, but also the person who is being told. Why is that? Why do we feel so awkward about these conversations? Ignorance, that’s all I could come up with, now I can’t say for certain, but I suspect a lot of people are like me, when we were raised we learned to deal with the things we were exposed to, and when we are not exposed to chronic illness we don’t learn how to deal with it. How do you deal with someone telling you they have a chronic illness? And I can tell you it isn’t easy being on the receiving end of that conversation. Is it okay to ask questions, to pry into a topic that is so personal? How worried should you appear? Should you just be stoic and take it all in, not displaying any emotions? Should you try to lighten the mood by making a joke about it? Or will that offend the person who is sick?
    Those questions are not so important when the person you are talking with is a lover, family member, or close friend. But when the person is someone like a colleague, a boss, a professor those questions become so very important. Because when we don’t know how to react to being told something like that, we do stupid things, it isn’t because we are a bad person, it simply because of our own ignorance.
    I have been very lucky in my life, I have meet several people in my life with chronic illness, the first two were cousins, both of which I rarely got to see, one has a mental illness, but because she lived in another state to me I rarely got to see her, and even to this day I feel awkward around her because I was never taught how to deal with her, how to act around her. The other cousin, I got to see a bit more of, he has cystic fibrosis, but the thing is he never saw his disease as something that should distinguish him, he never hid it from anyone, but he also refused to let it control his life. So as I grew up around him, I never saw him as being ill, to me he just had to take a lot of pills and occasionally had to go on this ventilator to help clear out his lungs, but in my mind he was never ill, so I never really learned from him how to deal with someone with a chronic illness. It wasn’t until I was about 21-22 that I next meet someone with a chronic illness, my then girlfriend who had arthritis, we had both just started at University and so it was a time of meeting new people for both of us, I learnt very quickly about arthritis, I learned that it wasn’t something that just affected old people, and because she was my girlfriend, it was easy to have that conversation, because I knew she wouldn’t judge me on my ignorance, I knew she wouldn’t get upset if I said or did something stupid. However, with that said, I also saw how hard it was for her, to explain it to our new Uni friends, I saw how hard it was for our friends to understand these things. Most recently I got to know Rosa Fontana, over a number of years Rosa and I got to know one another, I knew she had some kind of disease, but I stayed away from discussing the topic because I didn’t know how to bring it up, how to talk about it, I really enjoyed her company and I didn’t want to lose her friendship by saying something stupid. Thankfully she was very patient with me, she never really came out and dumped it on me in a one big heap, but rather eased me into it slowly, she taught me a lot about how to talk with people with chronic illnesses (though I doubt she even realises that), that it is okay to ask questions, and to accept that if they don’t want to tell you something then they won’t.
    So three final thoughts I wish to say, the first is to all the people out there who have chronic illnesses, when the time comes to tell us “healthy” people about what is going on in your life, please be patient with us, don’t corner us and unload on us, don’t throw it at us as a causal comment in passing, please try your best to ease us into it, let us know if and when it is okay to ask questions, let us know how we should behave, or if how we are reacting is inappropriate. I think you will find that a lot more people are willing to listen, learn and understand.
    The second is to my fellow “healthies” out there, conversation is a two way street, we need to think before we act, if someone comes to you and tells you they are sick or they have an illness, don’t jump to conclusions, listen to them, ask them questions if you feel the need, as I said if they don’t yet feel comfortable telling you, they won’t and they won’t be offend by you asking, if I have learnt anything from the few experiences in my life it is that they won’t be offended, if anything they will more likely appreciate you asking, wanting to know showing an interest and care for them. Another thing to keep in mind is that sometimes you will be faced with an illness that has to do with less than pleasant bodily functions, things that while perfectly normal, are not normally topics of discussions, it is a lot more embarrassing for them to tell you something like that then it is for you to hear it, and if they can summon the courage to tell you this stuff, then you can at least pay them the respect of listening.
    My last thought, I have to share, is for you Rachel, I started this post, stating that the cause of this awkwardness is ignorance, and I want to thank you and let you know how important I think what you are trying to do with this blog is. With this blog you are performing your own humble assault on the ignorance that abounds in society, Thank you for starting this blog, thank you for helping me to understand a bit better. You are doing a fantastic job, please keep blogging and never give up.

    1. First, let me thank you heartily for just setting aside the time to write such a detailed and heartfelt response. I think it’s extremely helpful for us to hear from people on the other side. Believe me, I know you have no idea what to do when you hear something like this. But it’s important to remind us ill people to be patient. Rosa is awesome, and I think she handles being ill with more grace and confidence than anyone I’ve ever met. She has such a way with words and with people. She’s who I want to be when I grow up. Okay, we’re almost the same age, but she is a teeny bit older, so it counts. She is a wonderful example of easing people in to the news, and I hope I can develop that kind of tact and grace. It does take a lot of courage to talk about it, but that’s mostly because of ignorance. If we had the assurance of being understood, being sick would be so much easier, and talking about it would be like talking about anything else. That’s how it should be!

      I actually originally had a little paragraph about how it is to be on the other side of the picture, but I felt like the post was getting long and I really wanted to focus on guest opinions – which you facilitated perfectly! It’s more meaningful coming from you anyway. But it is hard to know how to react. Sympathy, jokingly, what are you supposed to say? I think, more than anything, we just want the heartfelt attempt to understand that you described above. Ask questions if you have them. You can express sympathy and you can even make a joke as long as you show that you care, and you want to understand.

      Ignorance is the biggest problem with invisible illnesses. Like you said about your cousin, it often seems as though we are not ill. That’s beautiful and wonderful in some ways, but it’s also extremely crippling to awareness. Often times people can become aware that you’re sick, but since you don’t look it, and don’t act it, it’s easy to write it off. It’s easy not to see. I really hope that I can make a difference and raise awareness with this little blog, and comments like yours are so encouraging and make me feel like I am making a difference. Thank you again for taking the time to comment, and to share your story. I hope you’ll follow us or join our facebook or twitter so we can keep in touch. I think you really helped shed some light on the topic and I know you’ve given me some good things to think about the next time I need to have “the talk.” Thank you again!

  2. Hi I’m Nicola, and I just wanted to say that I really appreciate this post. I’m a “healthy” as Michael put it, but my mom has an invisible illness, MS. I remember how hard it was for her to get diagnosed and respected. I remember being worried about her all the time, but not wanting to strangle her with sympathy. I’m putting it in past tense, not because she’s dead (thankfully), but because she is getting better. She still has her bad days, but she’s nowhere near as bad as she used to be.

    It was really hard on both of us. She was frustrated because the doctors didn’t respect her or listen. They told her it was just in her head and prescribed her anti-depressants. She was tired of dealing with pain and not being able to do stuff she used to.
    I was worried about my mom. On several occasions she almost died (not from MS but from illnesses linked to stress and overworking). And I couldn’t understand why sometimes it would hurt when I hugged her.

    Mom says everything happens for a reason, and although I hated what she had to go through, it did help to make me a better person. I learned to listen and understand people when they had something to tell me, be it physical or emotional. I (slowly) learned to be sympathetic, but not overly so.
    I’m glad you’re writing this blog to bring awareness to invisible diseases. It’s hard when sufferers aren’t understood and have to put up with ignorance, and not always the kind ignorance that Michael spoke of.

    1. Thank you very much for sharing such kind words of encouragement, and for sharing your story! I am so glad that your mom ended up doing much better and finding the help and understanding she needed. She’s lucky to have a support base in her family, too. Unfortunately, many doctors can be ignorant and unhelpful, and we have to be prepared to talk to those kind of people, too. Thanks for sharing advice and hope with us!

  3. I feel so lucky for you to have found my blog, and now, I’m here reading yours. I’ve found a window into a world like mine. To be honest, I haven’t thought to much how others feel about my illness, because if I do, my mind boggles with the possibilities. I like it when people ask questions, and offer to help. I can’t attend classes unless others help by not spraying perfumes, deodorants (roll-ons are fine) or other spray products.

    And the worse experience has been a comment from another student about not looking sick and how they were so bothered by, “people like me who act sick just to claim benefits and avoid going to work.” I go to uni so that I can get a job, working from home, doing what I love: writing. This happened before I became even sicker. Now I have to wear a mask (as you may have read on my blog), so it’s kind of a ‘red flag’ that I’m sick.

    I had to leave one school because I could not gain access to the classes or the teacher. This particular teacher would be like, “What smell? I don’t smell any perfume!” Said while she was marinating in it.
    The affair ended as a local Human Rights case, I suppose I came out on top (finished the course online with a personal ‘one on one’ teacher) but the anxiety caused from this has never left me. However, it’s made me stronger, more able to advocate for myself.

    Now, in my new Uni, they have a real disability policy and I can’t believe how helpful they’ve been. Right now, I’m doing it so tough, I can’t go to classes, and they’ve made it so I can attend one of them (my beloved poetry class) via Skype. They’ve also made audio recordings of the classes. And, put in a note taker for me.

    Thank you for this blog. I love reading about other people who are dealing with illness and studying too.

    All is not lost: keep looking at the bright side… 🙂

    1. Thank you for sharing so much of your experience with me here! Yeah, the “people who act sick” comment really hit home. Nobody knows, I try to tell myself that. It’s ignorance, not hate, and that’s somewhat more forgivable.

      I think it’s so great that your school is helping you out so much now. Getting help from Disability really helps. I’m about to graduate, but I ended up never going to them for help because my own doctor said it would probably do more harm than good because of the stigmas. At least he was honest. But you’re right, it is all a matter of looking at the bright side.

      Writing a letter is a fabulous idea, I’ve never thought/heard of that before and I bet it worked great. Especially for a writer, a letter is a good comfort zone where I would feel safe talking about my illness. Thanks for sharing such a good idea!

    2. I have a few examples, but the possibilities are endless!

      First, posters. College campuses are plastered with posters, but there’s a reason for it! I’ve gotten a big response from using posters at my school. Feel free to use the Do I Look Sick poster, or design one yourself! Try to put some information on there that will draw people in, along with a link to more info on illness.

      Here’s the link to our poster:

      Another thing I’ve done before is hand out small, shear awareness ribbons – “invisible” ribbons for invisible illness.

      And finally, keep an eye and an ear out for awareness events. My university hosts events like “You Are Not Alone,” which is an information fair on all kinds of things – depression, sexual abuse/illness, addiction, etc. And I contacted the people who set it up and asked if I could come and talk to people about invisible illness. Any campus event is a great way to raise awareness, and students are usually encouraged to contribute. Get creative! Halloween party? You can put on the horror story angle – “learn about the monster within!” “This IS my costume! I don’t look at all like what I really am….”

      In short, go to where the people are, and bring information! 🙂

      1. Thanks for the info on that. At the moment I’m at home because I can’t access the classes I’m in, due to fragrances and sprays on students. Last year my classmates were really good about it. This year, not so much. (I still have one class that I can go to, and the people in that class are amazing). It looks like I either campaign or quit. I’m not as brave as you, and I hate speaking in public but I can muster it if need to. Thanks for you info.

      2. Oh, no no no, I do NOT speak in public. I generally stand around with fliers or cards and just say something like “I’m raising awareness for invisible illness – here’s some more information.” I’m much to timid to say more than that, haha. But I think a little half page with info on how fragrances and stuff affect you would really make people think twice!

      3. Oh, that’s okay then. You can be my role model for this. I can do what you do. I do NOT speak in public either. There is an an awareness day for chemical sensitivities! Thank you

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