There's Always Someone... - Uncover Ostomy
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There’s Always Someone…

So last night I had a conversation with a girl I went to ostomy camp with. We went to a place called Horizon in Calgary. It was a great week long experience to meet other ostomates and to learn from them. I have some great memories from there…But anyways, this girl… I don’t want to name names, to be fair to her, but I’ll explain how she always came off to me…

She was a quiet girl. Seemed like one of the ones who was forced to come to camp out of her own will but stayed quiet about not wanting to be there to avoid drawing attention to herself. She rarely participated and didn’t really talk when the rest of us shared our stories. I never really talked to her because I thought she would have preferred to be left alone. Maybe I should have.

Well last night, and after World Ostomy Day ended, her facebook statuses read:

“yay finally that embarrassment of a day is over.”

“Hate’s how people would be celeabrating such a pointless day there are much better things to celeabrate than this seriously do you think you’ll make an improvment … NO you wont”

 

Of course I had to comment on the one about making an improvement, just like other fellow campers had commented, and I said, “it’s working so far.”

After I did this, she started to message me on Facebook. She told me that she was embarrassed by the way I was promoting the ostomy and she was ashamed to have one because of it. She didn’t understand how talking about myself and my ostomy was supposed to help. I kindly explained to her that our campaign is not about the ostomy but about a normal girl who happens to have an ostomy. She said she didn’t the point of the whole thing. I told her it was to show other ostomates that it was ok to be proud of what they had and to teach others what an ostomy is. She replied saying we weren’t giving enough information about the ostomy and I told her it takes time and that you couldn’t force all this information on someone who had no idea what an ostomy was and to expect them to understand or listen. I told her by getting people to ask questions about it, they would learn. I said a person is more inclined to listen to an answer if they asked a question for it in the first place.

Even after I explained all this to her, she still didn’t approve.

No matter what the topic, there’s always someone who doesn’t like the message. Just like yesterday someone commented on the facebook page saying she didn’t think I actually had an ostomy. Someone’s always going to have something to say. I know that. But that’s not what bothered me so much.

The thing that did bother me was that this was a girl I went to ostomy camp with. She was part of my support system. There are tons of other campers who have already joined in and promoted the campaign themselves. She was part of their support system too. I just made me think. Maybe she missed something during that week of camp. Why isn’t she happy that the message is out? In whatever shape or form its being told, shouldn’t she be happy the campaign is helping others like her and teaching those who had no idea what an ostomy is?

Like I said, I expected people to be upset, I just never expected a fellow Horizon camper to be the one…

How do you feel about the campaign?

 

Jessica Grossman
info@uncoverostomy.org
9 Comments
  • Esten
    Posted at 04:08h, 05 October Reply

    I am so happy that you started this campaign Jessica!

    Something like this is just what the world needs. The world needs to be educated about ostomies, so that people understand. As you said, there will be a few here and there who will be unhappy with those of us who choose to be open about our ostomy, and prompt others to ask questions so we can educate them, and tell them our stories. But the majority of people i think will be very accepting.

    The other day when I posted the picture of myself with my ostomy out, I got a comment from another ostomate who is friends with me on facebook. She commented and said "Seriously..? I don’t put my poo on facebook." She has an ostomy herself, and it’s unfortunate that she is not as comfortable witih it as some of us are.

    That is the reason I posted the picture of my ostomy though, to encourage anyone who chooses to, to comment on it and spark conversation so I can educate others about my ostomy, as well as the story that goes with it.

    I am extremely proud to be an ostomate, and I am so glad that you embarked on this great campaign.

    -Esten-

  • Jessica
    Posted at 14:10h, 05 October Reply

    Thanks Esten!

  • Tinna
    Posted at 15:25h, 05 October Reply

    The comment made me sad too Jess, but think you handled it in a very mature and adult way. For whatever reasons some people are crippled by shame, or worry that people will find out. Each of us go through our own process, and for better or worse, some of us end up happy and open, and some people….don’t. It sucks, because once you open up (to whatever level you feel comfortable) you really will find that people don’t care, and that it doesn’t matter. My ostomy may not have saved my life, but it gave me a life, and the experience of having one has opened me up to so many great opportunities. I still get a little shy discussing it at first, but that is mostly based on how I feel about the person I am sharing it with. I wish more people could let go of the weight of having to hide…the effort is exhausting. I guess that is what this campaign is about, and not that I needed that much of a reminder, but when I saw it I was like " yah, I can be pretty, sexy and exciting and have an ostomy, it doesn’t define me, I define me". I wish more people could feel that sense of freedom.
    xoxo
    Keep up the great work

  • Martin
    Posted at 21:25h, 05 October Reply

    Hi Jessica, I think what you are doing is incredible and will really help people understand what life with an ostomy is like. I hope you don’t mind, I posted your video on my blog. I figured it might help reach a few more folk. Good luck with the campaign and keep up the excellent work.

    Martin

    http://www.numbertwos.blogspot.com

  • Nancy
    Posted at 00:37h, 06 October Reply

    I think that what you are doing is amazing and a very good thing. I am not young (48 years old) and have had a colostomy only for 10 months. It is important that other people know that an ostomy does not make us "weird" or unable to do things that anyone else can do. I teach at a major southeastern U.S. university, and in a class of 291 students today, while explaining pragmatist epistemology and the relationship between the usefulness of information and its truth, asked the students whether they knew what Saturday October 3rd was set aside to acknowledge. Nobody knew, but they do now. I put your site up on the movie-theatre sized screen in the classroom. It was a learning experience to illustrate a point within the subject that I teach as well as to help to make people aware of what an ostomy is. You are truly doing very good work. –Nancy

  • Dennis
    Posted at 23:34h, 13 October Reply

    This is a great site and a great service, Jessica. I will definitely be following it and promoting it on my site. I’ve been trying to tell people for awhile now that an ostomy is nothing to be ashamed of. A pretty face like yours will go a long way in showing others that ostomies aren’t the end of the world, especially to all the young girls out there who are worried it will destroy their image.

    Take care,
    Dennis

  • Rich
    Posted at 07:40h, 11 January Reply

    I recently discovered your blog and would have to agree that what you are doing is amazing. i have my own set of digestive issues that are as of now unresolved due to lack of help but you have put an inspiration out there for times like tonight when i feel hopeless, depressed and lost in space. you are very beautiful all around, much respect goes out to you. (oh and extra props for being a comic book fan, what a dreamgirl!)
    thanks.

  • sm
    Posted at 22:18h, 10 February Reply

    I’m the mom of a young child with UC and if one day she faces surgery I want her to be confident and proud of who she is and what she has overcome. It’s wonderful to have you as a role model. I hope the young woman who was embarrassed by your campaign is able to receive the help and support she needs to accept herself and live her life free of shame.

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