Illness Concealment vs. Openness: Personal Experiences

I spent most of high school in pretty darned bad condition, and sometimes my illness wasn't too visible, but most of the time it was. I had skin problems, and my hair fell out, my gums and eyes were inflamed, and I was wasted and thin to the point where I looked years younger than I really was. On top of that, I missed 3 to 4 days of class per week when I wasn't just flat out gone during hospital stays. My classmates were actually really great in that they almost never let on that they noticed anything, and only occasionally did somebody make a tentative inquiry as to whether I was "doing okay." I always assured them that I was and made up excuses to explain, for example, my bright red skin: "Oh, I had a weird reaction to this soap. It'll go away." I lost track of what lies I told to whom, and looking back, that was NOT the best way to handle things. I just didn't feel like everybody knowing I had a serious long-term illness, even though they could pretty much figure that out for themselves. Only my close friends knew what was really going on, and even they didn't really ask for details.

I know there were other kids at my school with health problems that they mostly concealed, but then I sat next to this one girl in a jewelry class who wasted no time in informing EVERYBODY that she had Crohn's disease and a colostomy. It was pretty much the first thing you learned after her name. She actually talked about it quite a lot, in an almost jokey tone most of the time. In spite of this, she kept it fully covered by her clothing. I didn't say a word to her about my own Crohn's because I am not a talky person when you put me in a group of people. At that time, I didn't have an ostomy and wasn't too interested in hers. If I had been though, she would have had plenty to say. She gave a presentation about it to her speech class. She made a keychain in the shape of a colon. When that semester of jewelry class was over, I never saw her again, but I thought about her from time to time because she approached her illness in a way that was so different from my own methods.

After a little consideration, I understood why she chose to be so unusually forthcoming about her ostomy. Obviously, many of us have some anxiety over how to tell people or whether they might find out. From day one, this girl did not have to worry about that with anyone. They couldn't find out what they already knew. People she had gotten close to couldn't suddenly treat her differently because they'd befriended her with a full understanding of the circumstances of her condition. She might have seemed a bit odd with her eagerness to bring the ostomy up out of nowhere, but her carefree attitude reassured everybody that they didn't need to worry about it at all. All our classmates seemed to react well to this strategy, making friends with this girl in a normal and anxiety-free manner. So that's cool. When I told this story to my ostomy nurse though, thinking it was a bit of a funny one what with the keychain and all, she reacted rather badly, telling me it seemed like the girl was "fixated" on her ostomy and that I shouldn't let mine be such a big part of my life. Huh? It's a HUGE part of my life. I don't choose to view it as limiting me, but it has to be taken into consideration. There's a lot of responsibility involved in caring for it, for one thing, and I'm getting off my original topic. Anyway...

I wish now I had actually talked to the girl from my jewelry class, whose name I don't even remember, and maybe kept in touch with her. I pretty much act like an observer in most situations, but lately I've been feeling the need to be more proactive in my own life. Certainly being a bit more assertive paid off when I was in the hospital and medical professionals who ought to know better kept forgetting to give me my medications at the scheduled times. There are actually a surprising number of people on the internet who are willing to share just anything and make a video of it to boot, so before I even had my surgery, I had seen YouTube videos of people caring for their ostomies, dressing and exercising with their ostomies, and just plain talking about their ostomies and/or IBD in amazingly personal detail. The majority of them are female for some reason. Strange. This openness on their part made things so much easier for me because before I saw what they had to say, all I knew about an ostomy was that I didn't want one. Silly me, thinking that was a choice. What's great was the fact that my first real exposure to ostomies was through competent, positive, independent (young) adults who obviously had this thing under control and were living full lives. I was hardly even nervous by the time I had my surgery, though still a little bummed out about the whole thing.

Doctors, nurses, and especially ostomy nurses can't seem to stop telling me how impressed they are with how I'm handling this-- apparently it's some big accomplishment to change the bag and wafer on my own from the time I was discharged-- but really, a lot of the credit goes to all the people who offer so much support and advice and basically just remind us all that we are perfectly normal people. My family kept telling me over and over that I could still have a normal life, and I'm like, "I got that, thanks."

So, this post got away from me. I've got quite a stream of consciousness thing going on here, but at least I punctuate it properly. If my blog posts had a cumulative title, it would be "I talk way too much online to make up for the fact that I never open my mouth in real life." So. Bye now.

--Natalie

Like you, Natalie, we should all be more proactive in our own lives. What a great post! You were lucky to know that girl in your jewelry class. No doubt you will have the same effect on many others. PB

Hello Natalie,Thank you so much for this post which I enjoyed very much. Tlaking to people is not the only way to communicate effectively. You have such a wonderful way with descriptive words that I think you might well be able to write articles or a book about your experiences. The person you met at school sounded as if she was doing a great job in educating others about her condition. You are also doing a great job in producing this sort of writing, which is just as educative. I would encourage you to do more of it and have it published in some form so that others have a chance to share in the experiences.Best wishes Bill

Everyone approaches their ostomy in their own way. I have had mine for 50 years now and it is nothing to me. I have a urostomy, by the way. When you have had it since you were little, it is second nature. But when you have gone to the bathroom naturally all your life and you suddenly have to wear this appliance, it is a shock to the system. So if you can be proactive in the situation, that is great. Others have to take more time. I am a newly certified ostomy visitor and hope to help people with this situation.

It is quite possible to find your old school mate at www.classmates.com. Just go to your town and school. Most schools will have a yearbook there where you can search for her name. Once you have that, tracking her down shouldn't be much trouble.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Natalie, I enjoyed reading your post very much. I have had my colostomy for a year now (12/16/11). It was a very big change in my life. I went to the hospital emergently without one and woke up the next day in ICU on a respirator with an ostomy. It took a lot of getting used to. I joined Meet An OstoMate after much researching the topic of ostomy online. Joining this has been the best help in my adjusting to life with a colostomy. I am 60 years old and am very happy I made it to 60 before having to wear a bag. The ostomy nurse at the hospital where I had my surgery was a great help, very supportive, and encouraged me to talk about it. However, I did spend many, many hours crying over it. Once I joined this site, it led to links on YouTube, and I watched every video I could on how to apply a wafer. What impressed me most was the age of the people making the videos; they are all so very young, and the "get on with your life" attitude they have toward it. I said to myself that if a person so young can deal with it that well, there was no reason for me to sit crying over it, and I should just get on with my life. Those videos were a tremendous help, as is being a part of this group. Try Classmates.com to see if you can get in contact with the girl from your school. Good luck.

Rbaker, hi, you said you were surprised at the age of people in the videos making them. I have had my urostomy since I was 2. I actually had a colostomy right after I was born but they reversed it. I now wish I still had it because I have short bowel syndrome which keeps me in the bathroom all the time. I would rather live with the pouch (except for the expense) than suffer like I do. Unfortunately, with all the surgery I had as a child, I have no room for a colostomy again. Still trying to figure out what to do. Glad you are coping with your situation. I am a certified ostomy visitor as of October. Good luck and keep up the great attitude.

Love your attitude and your willingness to be so talkative here. I am very chatty in real life but seem to just stay quiet here. I should change that, I think. I need support and friends with the same issues!

Thanks, Rhonda. I figure it is the way it is. At least you are alive and functioning. Contact me anytime. I have a urostomy, though not a colostomy or ileostomy, but still willing to help anyway I can.

Unfortunately, I don't remember my classmate's name, so I don't think I'll be able to find her. NancyAnn-- I'm sorry to hear of your situation, which basically mirrors mine for the entire 18 years I had a colon. Luckily, I've still got most of my short bowel-- supposedly almost three times what I really need-- but considering my age and how difficult my Crohn's has always been to manage, I doubt I'll get away without at least another surgery someday. Oh well. nbaker-- Yeah, I too am glad that I at least made it through childhood before having an ostomy; this is more than a kid should have to deal with, in a perfect world. Also, my friends and I were really rough kids and I'm glad I got to play without worrying about an ostomy bag breaking or coming off.

I've toyed with the idea of being, if not an ostomy visitor, then at least one of the people on my doctor's phone/email list for new and pre-op ostomates. However, I'm really not sure I've got the right personality for that. I take a practical approach to things, but I've been informed by several people IRL that I'm not very reassuring. I think I kind of come off like Spock.