How Do You Change The World? | Uncover Ostomy
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If You Can Do Anything With an Ostomy, How Do You Change the World?

A few weeks ago I contemplated writing a blog. I was sad and disappointed in myself and I had this overwhelming urge to apologize to you all.

After thinking about it over and over again… I felt it might have just been better left unsaid. And unsaid it went.

But here we are and here I am writing about this very thing. I am writing about it because I’m no longer just sad and disappointed in myself, but angry and frustrated at the society we live in.

Beware, there might be some swearing and there might be some harsh statements. There may also be some things you don’t agree with. And, as always, that’s fine. But what you’re about to read comes straight from my broken heart.

It began the week that we’re all quite aware of – when “ostomy” became the word on everyone’s mind. When that girl from the UK with an ostomy came out about wanting to be a model.

I saw an early article about this woman. I thought it was great to see some traction in the ostomy space and was happy to see it. I even kind of laughed at her storyline about how she wanted to be a model, because, well, I’ve made it very obvious that having an ostomy doesn’t stop you from professional modelling.

At least, I thought I had.

It was the following few weeks, when her story started going viral, that I was on the receiving end of hundreds of notifications. I was bombarded with Facebook messages from Facebook “friends” – people I knew well, people I hadn’t spoken to in years, people who knew me through other people… who were messaging me to tell me about this girl and share one of the hundreds of articles about her.

At first, I thought it was nice that these random people remembered about me and my ostomy and that they were thinking of me. However, that quickly faded as I began to see just how into this viral story these “friends” of mine were.

These people were not only sharing the article with me, but were sharing these articles with everyone in their social networks. These “friends” were sharing the articles written about this girl, and just in awe about how amazing her story was. These “friends” thought she stood for something.

A story about a woman who had an ostomy and wanted to overcome it to become a model. That was her story.

And they loved it.

What the fucking fuck.

Not a single one of these “friends” had ever once shared any of the plethora of inspiring stories/pictures that many of you have shared on the Uncover Ostomy Facebook page.

Not once had any of these people shared a blog post I had written, highlighting how the ostomy has never gotten in they way of doing anything, including professional modelling.

Not once had these people even shared an article written by a national publication highlighting our efforts.

Not. Fucking. Once.

But here’s this girl, just showing off her bag, wanting to be a model. And they’re sharing it.

They’re loving everything about it.

“Hey, isn’t this what you do? She’s amazing” (It is… but like… what?)

“Hey, have you seen this girl? They’re definitely just writing about her because she’s pretty” (Ummmm thanks?)

“Hey, you know that girl in the news made me think about the ostomy so can I ask you a question?” (REALLY. Like, THIS girl makes you want to ask about the ostomy, but our community of over 6,000 people doesn’t make you curious!?)

I even had another person tell me Uncover Ostomy didn’t have any shareworthy content.

Nothing anyone would ever want to share.

Not.

Anything.

Bag_Laying_website

It was literally boggling my mind that this one girl was getting all of this attention. Actually, it wasn’t just making me question what I was doing, but it made others question it, as well.

Uncover Ostomy

Yes.

Uncover Ostomy is reaching its five year mark.

And in one week, this girl accomplished everything I had spent every minute of my free time trying to get us to accomplish, together.

And then it hit me.

This sense of failure. It literally clouded my entire life for over 3 weeks.

I started to feel sick. I was depressed. I couldn’t focus. I cried.

I don’t cry.

I started Uncover Ostomy to get the public to see the ostomy for what it is – an amazing, life changing, gift. 

And after 5 years of spending my time writing, networking, promoting, urging you all to join me and share, and all of you doing just that – some girl comes out of the woodwork just with the hope of becoming a model and the world thinks that this is so fucking amazing.

You want to be a model? So do hundreds of thousands of other women and men out there.

You want to change the world?

Cause we do. 

While the ache of failure radiated through my bones, I knew I couldn’t sit by the sidelines. So I started to reach out to publications that had mentioned this girl and to give them the cause that had been missing from the story. To give them our story.

Thanks to some amazing publications, we got a bit of press – some really good press. (By the way, thank you to all those who shared the pictures that made it into this article!)

But I was still getting a lot of “no’s.”

I had been used to the “no’s” from the media. When we started UO, we were often rejected because the ostomy wasn’t glamorous enough – even though Uncover Ostomy was meant to change that. It didn’t matter – it was still too taboo.

So, finally, this girl opens up the conversation and I try and swoop in and let them know about the goal we’ve been trying to reach for almost 5 years, and most journalists just came back to me with more “no’s.”

They said they had hit their ostomy “quota” and that there really wasn’t anything left to write about. (Apparently, attaching an actual cause is not a good addition to an already buzzing story).

Defeated, at least I understood their reasoning. I got it. That made sense. Too much of the same content. Ok.

Until today.

Today, there has been another influx of ostomy related content focused on an individual being a model.

Except for the fact that the publication writing about this? One of the exact ones where I was told “there was too much ostomy content.”

They had our website, they had our Facebook page, they had my contact info, and they had our pictures.

And they fucking ignored it all.

I’m furious.

For almost 5 years now, we have come together to build an amazing place full of support, courage, and hope. An online community where, together, we are working to change the negative stigma surrounding the ostomy. We have a goal. A cause. A mission.

But society doesn’t care.

So, here I am, sitting, writing, fuming, livid. Feelings of failure wafting back over me, tears streaming down my face.

Selfishly, I feel like I’ve waisted the past 5 years of my life.

Overwhelmingly, I feel like I’ve failed you all.

Angrily, I contemplate how our society prefers one girl’s dream to be a model, over our dream to change the world.

Here I sit.

Not knowing what to do next.

I know I want to change the world, I just no longer know how.

—————-

And yes, you can be a model with an ostomy.

You can do anything.

Jessica Grossman
info@uncoverostomy.org
16 Comments
  • nataliejoan
    Posted at 20:59h, 31 July Reply

    Keep it up Jess. You are doing an incredible job. You are making a difference for 1000s of people, and most of all, for yourself. That is how you change the world. A little at a time.

  • Chucky
    Posted at 21:26h, 31 July Reply

    Shared.

    I feel much the same way every time I see a hundred thousand people share a picture with “share this and type ‘ballsweat’ in the comments and look what happens!” written on it, but I write a book that will actually help people not get cancer and oh look, five people go “nice one”.

    Sour grapes and despondency are a dangerous mix.

    But never think for a second that you are not making a difference. I’ve looked through your Facebook page and Twitter feed. I’ve read the stories and checked out the blog. That wasn’t because of some viral gimmick. That was my mum and dad seeing a news story about you all the way over in Australia, and telling me about it because you had a bag and wanted to help.

    THAT WAS YOU.

  • Caren S.
    Posted at 21:53h, 31 July Reply

    Jess, you’re doing great. You have definitely changed the way many people see the ostomy. Your site was one of the first pages I found when looking for support after my surgery and it helped me so much. You helped me and many others see how amazing life can be with an ostomy. It’s not just for old people, it’s not a death sentence, it’s a blessing; I even referenced your site in a college speech presentation on life as an ostomate I did last year ( Got an A+). What you do is awesome, keep it up. 🙂

  • Carmen
    Posted at 22:10h, 31 July Reply

    As soon as the story (the girl that wants to be a model) hit the press I had similar feelings. My first reaction was that of overwhelming joy to see an ostomate getting positive press. Then… People who had cringed and said how gross my ostomy was flooded my Facebook with her pictures. It hurt that SHE was seen as so beautiful and inspiring and I… I was nothing. These people knew what I had been through… Knew that my ostomy saved my life. OUR struggle for self acceptance… for self love… to be healthy… to have a “normal” life… none of that was important. But then I thought about getting home from the hospital with my ostomy feeling like I would never be beautiful again… then I found U.O (you had just started the site)… and YOU helped me learn to love myself again in a society where, especially as a woman, loving your body is hard enough… then I started encouraging and uplifting ostomates too… You may not feel like you have changed the world but you changed mine… I’ve always wanted to thank you for that… and this seemed like a good time. 🙂

  • Karen F
    Posted at 22:35h, 31 July Reply

    Jess, everything you’ve done is worthwhile and you’ve helped so many people. Your article made me think of something I read recently about Barbara Walters where she said that she’s proud when people say to her “you paved the way,” that she made it easier for the next woman. It’s hard being the first—you get all the grief and none of the glory. You can be proud of what you’re doing! You’re the role model, working hard every day, writing networking, promoting, struggling, getting no thanks….but some day, maybe 5 more years, maybe 10, someone will say “What’s the big deal? I’m an ostomate, I’m fine.” And you will have succeeded.

  • Kelly Rowsan
    Posted at 22:42h, 31 July Reply

    You should never compare yourself to someone who is not you. Bethenny is a great person, a very humble woman and also belongs to a colostomy community in the United Kingdom. She too has dealt with the pain that you and others have gone through and it is commendable for another member of this community to shine through the darkness that some may hide behind. Bethenny gives people strength and there is nothing wrong with that.

    You use this blog to rant about your ups and downs, love life and plead with people, on some subconscious level, to adore you and boost yourself worth.

    Ultimately, what hurts is that you critize a fellow member of your ostomy community for achieving more lime light than yourself…however, this forum, as much as you are the poster child of uncoverostomy, is greater than yourself Jessica. That is why Bethenny, as an average person with an ostomy, remains humble and can appreciate those she has inspired because there is a greater purpose in life and Bethenny is pursuing her true happiness above and beyond this forum bubble known to many as the Internet.

  • Jeff T.
    Posted at 01:48h, 01 August Reply

    You’ve done a lot of honorable work for the ostomy community, there is no doubt that your effort should be recognized. However, from reading all your blog posts, it sounds like it’s too much about your personal drama then about representing the community you wish to stand for. In some posts, it seems as though you strive to publicly humiliate those who have hurt you (I.e, your ex-boyfriends and “friends” – as you commonly quote) as some sort of social revenge. And it’s these posts that stand out and weigh heavier than the ones which are “positive” and “inspiring” simply because it contradicts characteristics of a true role model – infallibility and humility. For you to bash another (Bethany) like yourself (who actually does seem genuine and humble in her interview with BBC, and had no intention of becoming virally famous at all) sadly seems very selfish of you.
    Yes, you encourage people to share their stories (through comments on your Facebook page or through your contests), but you hardly ever write about those stories in your blog. What’s worse is that you seem to use your campaign as a way to fish for compliments about yourself (also blatantly shown by all your retweets on Twitter). You don’t even have a community forum on your blog for people to express themselves and share ostomy information. This is a prime example of how your website is all about you and not the 6,000 people in your community. Maybe you should rethink your campaign and how you represent yourself online, and maybe then you will get the international attention you so desperately ask for.

    I understand that this comment sounds harsh, but unfortunately it is the truth whether you take it constructively or not.

  • Ellen
    Posted at 05:09h, 01 August Reply

    Hey Jess,

    When I saw that story go viral I immediately thought of you and Uncover Ostomy. You’ve been doing for years what she decided to do for one or two photos. I think the fact that her photo and story went viral is a sad commentery on our society. People want to look at one dramatic photo of a hot chick with tattoos modeling her ostomy rather than raise awareness for the health complications that bring about the need for an ostomy. I would be extremely pissed if I were you as well. If I had friends who never shared my story but shared the story of a stranger instead because it happened to be a topic being talked about on the news. And then the media acted like all of these other people had the courage to show their ostomies as well because she did, which is total bull. Young, attractive people have been doing it for years. And you are an example of someone who IS trying to change the world; at least their perception of the word “ostomy”. I completely understand your frustrations but keep doing what you’re doing. Your story and words will still be here long after her message fades away.

  • John McNay
    Posted at 11:39h, 01 August Reply

    Jess, you are doing great work. But getting big coverage for your efforts and doing great work simply do not always go hand-in-hand. On another issue that I’m deeply involved in, I constantly see others doing less than I’ve done getting tons of publicity for their effort while I’ve struggled to get any attention to my issue at all. At some point, I’m sure that the break will happen on this other issue but in the meantime, I just keep plugging away.

    Also, you are systematically reaching out and touching people in ways that these other folks are not. Your thoughtful and thorough approach is the way to make real changes. I’ve had my ostomy for nearly 50 years and you’ve made more progress on this issue than I ever have.

  • Tom
    Posted at 14:34h, 01 August Reply

    Hi Jess, you’ve prompted me to write a response to this impassioned and honest blog that I admire.

    First off, i’m a big, big fan of you to the point I’m slightly in awe of what you do and the inspiration you provide, please keep it up! People like you make the difference and will be remembered.

    However, as you know, the media work in funny ways and you shouldn’t begrudge Bethany getting all this attention, which appears that you are a little bit. The most important thing, in the grander scheme of things, is that ostomy awareness is increasing and the perception of having one is improving. This is what matters, how it is achieved is secondary.

    I understand what you’re saying, in the you are a long time ambassador and educationalist about the issue and so should be quoted for articles. In an ideal world, this would happen too, but the mainstream media are fickle – many are not health reporters and really know anything about having an ostomy. It went viral due to bold images of Bethany in her bikini – end of. You have done the same in you photoshoots, and it didn’t go viral, but don’t be too negative about it – you have a worldwide following and, most crucially, you are not a passing fad – you have been campaigning for years on the issue which thousands of people worldwide recognise and applaud.

    Bethany deserves respect for her braveness – please don’t begrudge her it. The issue is more important than any one person.

    To end this blog on a positive note, I think you are an absolute credit to ostomates and I will always follow what you have to say,

    Tom x

  • Allen P
    Posted at 16:51h, 01 August Reply

    I am a recent ostomate of about 4 months. The word ‘ostomy’ came into my life 4 years ago when I was hospitalized and the doctor told me I’d have an ostomy if I didn’t get better. A year later (2011), I came across your blog. I was awed. I looked up to even though we had never met. I was confident when I went into and came out of my procedure. I knew life would be ok. All because of you.
    When Bethy’s pic went viral, my first thought was how Jess may be able to leverage UO through Bethy. As I went through your Twitter & FB feed, I started to realize you were a vain person. I had gotten that feeling based on your tweets and posts. I also went through a lot of your tweets and FB posts to see how many times you had mentioned “that girl’s” name, as if she had done something wrong. I think you mentioned her name ONCE. It’s ALWAYS about you. There are so many blogging and tweeting about ostomy awareness. They all seem connected to one another except you. I don’t think I’ve ever seen you re-tweet or share another’s ostomates tweet or blogpost.
    As the pic went viral, I was waiting for the day that you and Bethy would connect. She could help leverage UO when she was going to make rounds on interviews through TV/radio/internet. You should have reached out and made that happen but I could see as every hour and day passed by you were not going to because this girl took your spotlight. You make this campaign about “us” and not you, but my “gut” and interpretation for a while now was that it is all about you. I also believe you use the campaign to gain traction within your professional career.
    Take for example, Black Beckford. He never once took Bethy’s viral pic as a negative. I could see he was happy for her. He encouraged her and supported her as much as he could. In the end, Bethy mentioned him on her rounds of interviews. He’s not discouraged, he’s still campaigning positively.
    You are in the tech world. You should know much, much better than the common person that social media virality is ludicrous. They are spontaneous occurrences. You may read this and say well this was about my friends not sharing, “us” not getting the attention, etc. By the tone of your tweets, FB posts, and this recent blog, just the fact you don’t mention “her” by her name, Bethy, tells it all. You are BLAMING HER for what happened, yet she had nothing to do with HOW the pic went viral. As far as I’ve seen in her interviews, she is an extremely humble person. Me, you and “us” as ostomates should be honored and humbled by what has happened. As ostomates, we should be UNITING as this kind of event may not happen again.
    Your blog post on swimwear was awesome. There were so many people being negative and I agreed with everything you said. You responded to the negativity by saying “What I do consider myself to be is a representation of what experimentation, adaptation, and confidence can look like. Not all bathing suits fit people the same way – ostomy or not. We all just have to find what works for us.” Based on reading your post I’ve seen you succeed from childhood, college, & professional life with an ostomy, I can assume you are the kind of person who makes the best out of what is given to you. With Bethy’s pic going viral, I don’t think you made the best out of the situation. Personally, I would have loved to see you in UK touring with her on interviews.
    Unfortunately, Ms. Jess Grossman, I have lost some respect for you today. My hope was when Bethy’s pic went viral, you would be re-tweeting her article and trying to reach out to her avidly. If you have and she hasn’t reached back out to you, then I am wrong and completely apologize. But based on your public tweets and posts, I didn’t see that. This post may have been some venting or a mistake, but coming from a leader in the ostomy media world, was extremely disappointing. In all honesty, I envisioned this post coming weeks ago, but hoping it would not be posted. Nonetheless, I will always be a loyal follower albeit disappointed, but have a different perspective. Best Regards.

  • Mark
    Posted at 21:29h, 01 August Reply

    Jess: You have done an amazing job and have help 100’s……………..1000’s of people across the world. No one can take that away or EARN what you did because of ONE article. At the end of the “hype”, you and your message will endure while others will fade. Be proud of that and continue 🙂 You know as well as anybody that this “media world” is ALL about timing.
    You are a blessing to us, keep up the great work.

    Mark

  • Susan
    Posted at 22:02h, 01 August Reply

    I’m thinking that your blog has opened the door for the recent model to post her pics and go viral.
    I’m thinking that you both have the same mission: public acceptance; and that if the mission is the goal; you are closer to it than ever!
    So… I’m thinking that it’s a good thing, really.
    If you had not provided a certain amount of public exposure to the issue, it would not have gained enough acceptance to allow the UK effort to get such acclaim.
    It may not make you feel any less over-looked, but believe me; you contributed wildly to the acceptance factor!
    Susan

  • Dave Hardy
    Posted at 01:53h, 02 August Reply

    First, let me say thank you for all that you’ve done. One of the big reasons I did decide to have my permanent ostomy surgery was because of you and all the other ostomy awareness folks out there on the internet. Anyways, I could praise you all day but you’ve gotten that from all your loyal community. I’ve always enjoyed reading about your life with an ostomy. It felt very real. However, I’ve been moved by this post and I am now doubting if you’re really doing this campaign genuinely.

    I echo some of the negative comments here. I’m a little stunned at your feelings towards “this woman.” l don’t see what she did wrong. She just happened to hit the social media wave at the right time. Obviously, it was luck. You’re a smart girl. You know her name. Why call her, “this girl.” Completely demeaning. She’s one of us. My initial reaction was full of excitement. But as days went on, most of the online ostomy activists were putting her in a negative spotlight. I was hoping you’d be the one to step up and defend her and eventually unite the community. But you said nothing about Bethany. You continued along with the other ostomy folks and ignored her. It was like high school drama. But it wasn’t, it was about life or death with IBD and ostomies.

    I follow you on Twitter and Facebook. Once she went viral, I didn’t see you mention much of her. Maybe once? Again, you’re a smart woman. You saw the virality of the ostomy and as smart as you were, you started reaching out to media outlets. Rejected or not, you made the massive effort. But you couldn’t put your ego aside and reach out to Bethany (at least no one could see publicly). You knew you had a better chance to possibly piggy back off of her viral pic. You two could have possibly modeled together or anything else to bring awareness. Together, you could have lifted UO to a much better place. Instead we’ve got this post.

    These are critical comments. You’re very young. It’s bold of you to share your thoughts. Take the positive and negative feedback. Don’t quit, gather yourself and respond effectively. You still have time, so reach out to Bethany. This moment could define your campaign to bring ostomy awareness to new heights. Best of luck no matter what you do. But I hope you decide not to quit because you’ve been through much worse.

  • Chucky
    Posted at 19:51h, 02 August Reply

    Here’s an article I felt moved to write about this whole clash. Sorry, I know it’s really long.

    TL;DR for those coming down in support of Jessica: I agree with you and I understand how it feels when someone effortlessly succeeds at something you’ve been trying to do. But I know none of us actually believe for a second that Bethany got here effortlessly. There is nothing easy about having that bag. We are all of us survivors and nothing should divide us.

    TL;DR for those coming down in criticism of Jessica’s reaction: There’s a time and a place for tough love, and the comments section of an obviously hurt and support-seeking blog post is not it (in my opinion). Jessica’s a big deal to us and it can be a let-down when our heroes don’t act the way we expect them to act. But that’s our problem, not theirs. She’s an impressive person but still just a person, and sometimes people react from the gut.

    https://stchucky.wordpress.com/2014/08/02/a-minor-venting/

  • Pat T
    Posted at 10:21h, 12 August Reply

    Jess, I’ve read the other comments and I’d like to add my own. You have Already done much for the ostomates in sharing your story. I fought with UC for 20 years before the doc said “it’s coming out”! That was in 2007. So, here I am 7 years post surgery and I have a life again. You have been an inspiration to me and so many others. Don’t stop now. I know that when others take your “limelight” it hurts. I’ve had it happen at work. They not only got the accolades, but they also got the bonus check! You have to evaluate what we are here for, why do I exist. For me, as a beliver in Jesus, I exist to advance the will of God. It’s not easy, but it is rewarding. In fact the payoff is truly delayed gratification. There is a God in heaven and He knows you. If we meet and you forget me, you have lost nothing; but if you meet Jesus Christ and forget Him, you have lost everything.

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