I Signed Up for This Fight, Not That Fight - Uncover Ostomy
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I Signed Up for This Fight, Not That Fight

It’s been a while since I’ve done this, but it’s a long one!

For those of you following me on Facebook, Instagram, Twitter, or even just on our Facebook page, you’ve probably seen the whirlwind of a weekend I was dealing with: misinformation, accusations, and “outrage enthusiasts” coming out of the woodwork.

It started when I caught wind of an article that the CBC (Canadian Broadcasting Corporation – a government agency) published under their “Campus” brand, titled “I’ll never be normal now.”

What.

It was an article that began by saying that, an ostomy is a very visible device that’s usually associated with the elderly,” and continued on to literally shit on the positive side of ostomy surgery. 

WHAT.

Often, publications write about ostomy surgery in this way because they are simply misinformed about it. They take what they know from other media sources, which are also usually wrong, and run with it.

That was not the case, here. 

I “pre-interviewed” for this segment, and was asked all about my life with an ostomy. As I normally do, I told my story about how I almost died from Crohn’s Disease and that surgery saved my life. I was specifically asked about how the ostomy affected my university life, to which I told the interviewer that it didn’t affect it, per say, but that the ostomy actually gave me the ability to flourish in university. I was pressed for negative reactions, negative stories, negative feelings – but I had none. I had nothing but good things to say.

So the article came out and my (positive) side of the story was not used (they said because my story didn’t have anything to do with university… ?!), which I didn’t really care about. What I did (and do!) care about, however, is that they decided to completely disregard everything they knew (and that I told them) about the ostomy. This publication was fully aware of what the ostomy is, what it looks like, that it saves lives, and that people who live with them are normal. They didn’t care.

You follow me, or you follow Uncover Ostomy, but either way you know that is it our mission to stop the stigma surrounding the bag by whatever means necessary. So, that’s why I called the CBC out on this. Someone has it do it, and I’ve been doing it since UO began and it’s what UO is for!

What did I get back? A scathing attack email that did not even include an apology to me or to any of us in the ostomy community. At least they agreed that the “very visible” description was wrong and changed it… but it was too late. Once it’s out there, it’s too late. 

I was (and still am) disgusted at what I was sent, so I responded back. It is now 2 days later and I haven’t heard a word.  

(My response in red, their original email to me in black).

Upset at how a government agency could respond in such a way, I posted it on my Facebook profile and also on a secret Facebook community group that has over 70,000 members. (The one below is on my Facebook profile, not the secret group.)

My post in this secret group was similar to the post on my profile and I asked for reporters to write a story on the situation or just to write another positive story to negate the negativity (one negative story means we need multiple positive to drown it out!) I got some amazing support from the group and everyone wanted to see a story written.

That was until someone decided to highjack my post with her own negativity. (Name removed at request of the poster, but story and comments allowed to stay for context and the important message!)

IMG_2102Normally, (and I say normally because I do this once in a while) I don’t include names when I post something like this. However, since the comment was posted in a group of 70,000 people, anonymity was not what she was looking for. 💁🏻

Anyway, this girl, as you can see above, decided that she wanted to comment on my post for help and derail it by explaining that she didn’t like what we were doing, and that we were essentially doing it wrong. She specifically said that everyone on the site were all models and that we weren’t sharing the right message. She claimed that if we really wanted to be an awareness organization, we should include all diverse body types and not just “perfect size 2 bodies.”

Wait, what?

First of all, she was 100% unaware of the contest we ran last year to get Brandon, Kaitlyn, and Susan/Noah on our team and unaware, as most of you are, that we actually had a really small pool of applicants! When we were looking through possible contributors, I honestly don’t even remember seeing any applicants of colour, or even of “plus size” apply! (If we missed you, I am so sorry, but maybe your post wasn’t public or it got lost in the shuffle – it’s very hard to sift through everything posted on social media!) Not only that, but as Brandon, Kaitlyn, and Susan will attest, we also had to interview candidates to learn more about them and about their stories to see if they were diverse! We tried to bring in people with diverse stories because the stories are what we focus on, not the bodies. Not to mention how hard it was to pull this whole thing together with no budget no support (you probably don’t know this, but we actually did not get sponsorship for this contest and we had to do it ourselves with no money!)

Second of all, they are not all models! Mark Smith, the guy who took Kaitlyn’s photos for us, who is also in this secret group, actually jumped into this thread and explained to this woman that no, Kaitlyn (as pretty as she is!) is not a model. That didn’t change the commenter’s mind.

And, third…Um, did this girl really just tell me – a girl with a shitbag on her stomach – that I have a “perfect body”? 

When on this earth has someone with an ostomy ever been told they have a perfect body?

HA!

Part of me had to laugh. Part of me wanted to share her comments to show you all how far we’ve come. We’ve gotten so far with ostomy awareness and acceptance that I am not getting shamed for my bag, but I am getting shamed for my skinny body.

The other part of me, though, was actually pretty hurt at being body shamed. Part of me was mad that she said that Uncover Ostomy – a website, campaign, and organization that I’ve been working on for almost 8 years now – didn’t mean anything because of my body. I was upset that somehow, to her, because of the way I look, that my story doesn’t count and that what I’m trying to do means nothing.

I spoke to someone about this after the fact who, at first, said he understood where she came from. He said that I shouldn’t take it personally because it’s just my website and that I am not my website. To that, I politely disagreed and said, “actually, I am this website.” This website has chronicled my triumphs, my thoughts, feelings, my failures, and my entire life. After I explained that to him, he got it. He said that at first glance it didn’t look that way because there were multiple people on the site. After my explanation, he understood why I was upset. So, if you’re new to Uncover Ostomy, this website is personal to me.

I also took this girl’s comments to a client of mine for feedback.

Her big thing is body positivity and it’s something her and I speak about a lot. In fact, she has opened my eyes to another side of things that I, honestly, hadn’t seen as a “skinny girl.” Even as someone who spent many years being very heavy from steroids and shamed for it, I never really thought about these things the way she’s taught me to. My client has opened my eyes to what “thin privilege” is, which basically acknowledges that being body shamed for being skinny IS different than for being large.

With her being the body positive queen, I wanted to see what she thought about the negative comments I was getting from this girl, and whether or not my feelings were justified.

Her response to me was her just quoting my own quote back to me:

“you’re a gal ‘with a shitbag on her stomach’ – a perfect body HA.”

She also pointed out that people will shame anyone and everything these days, no matter what the topic. All we can do is laugh, otherwise we’d never get out of bed!

What she said was, and is, so important to me and something I needed to hear.

I needed to hear that because it gave me perspective. By sharing my sadness, hurt, and anger at the CBC and at this woman’s comments about my body, I ended up opening the door to “outrage enthusiasts” who marched in continued to post negative comments about their “outrage” at things that they were either misinformed about, or that made absolutely no sense!

These people were making me feel bad about my body and about the all the hard work and effort I’ve put to the cause that I have been working on for years. 

(By the way, “outrage enthusiast” is actually a word I learned yesterday, FROM the secret Facebook group, (ha!) referring to people who will find anything to get upset about for the sake of being upset.)

While I was getting tons of great feedback and support (which is needed to counteract the CBC article), these negative comments were overshadowing the message I was trying to send.

My client’s comments reminded me to laugh.

They also helped me step back and remember that you can’t please everyone, no matter what you do. 

Now, this woman’s comments (and some responses to her comments from others) about the campaign reference “constructive criticism.” Don’t get me wrong, I know exactly what constructive criticism is – I give it to the amazing gals who work for me all the time! However, what I was seeing here in this girl’s comments, as well as the negative comments from others is not constructive.

Constructive criticism isn’t just about what you are saying, but it’s how you say it.

This woman could have easily private messaged me to say “you know, I am having a hard time relating to your cause because I don’t feel I am represented,” to which I would have said, “I really appreciate that feedback and understand where you’re coming from.” This information is vital to the success of our campaign.

Instead, this woman chose to attack me personally and derail the purpose of the post to bring attention to herself.

That is not constructive – that is destructive.

Now, let me be clear about “constructive criticism” one time, and one time only:

I, and the rest of us the UO team want to hear your feedback – we do! We always want to know how we can better reach our community and advocate for them, as well as how to spread the message farther. We’ve sent out surveys asking for it! It has never not been the case.

So if you feel that you want to give us your ideas or your suggestions to improve on what we’re doing, please do so through our contact form.

I want to follow that up by clarifying, however, that due to lack of resources and support and the fact that we run on an entirely volunteer basis, I cannot guarantee that we can implement your suggestions in due time. Do you know how long it took us just to get Kaitlyn, Brandon, and Susan/Noah on the site? It took more than a year! And that was with 0 dollars (but with some amazing volunteers!) If you have suggestions that you want to see happen fast, you are more than welcome to donate to the cause. 

Otherwise, if you feel that all you want to do is shit on (literally) the work we are doing the way I and the team are doing it, then I don’t have time for you. You can leave your comments to yourself.

Honestly, the past few days, my body has been tired.

I am TIRED. 

I am tired that I have to keep going up against these big organizations/publications/media outlets to change the way the ostomy is portrayed. I am tired of yelling into what seems like the abyss. I am tired of trying to chase this misinformation down and replacing it in order to save the lives of those facing surgery. The CBC just added another mark to the “negative” side of the tally.

While I am tired, I also know signed up for this. I asked to be tired. I started Uncover Ostomy to work against the negativity, to change the mentality. I signed up to be tired and I signed up for a fight. 

But when outrage enthusiasts decide to come out of the woodwork and derail what is already a rigorous, tiring, often seemingly hopeless process, it doesn’t make it any easier – it makes it worse. 

I didn’t sign up for this for you to come in and hijack what I and what Uncover Ostomy is doing.

So to all the outrage enthusiasts out there – if you don’t like what I’m doing, go do it yourself the way you want do it. 

Otherwise, leave us alone.

In the meantime, I’m going to keep fighting, no matter how tired I am.

 


 

Edit: the poster  reached out to me and asked why I did not share an additional comment that she shared, so out of respect and to have an open and honest conversation, I have added it below. It still does not change how I feel about her words about my own body or about what she said about UO, but I owe her this for you to formulate your own opinions. She also asked me to edit the comments so her name was removed, which has been done, but she allowed me to keep it all up for context and to share an important message.

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Jessica Grossman
info@uncoverostomy.org
6 Comments
  • Donna Leung
    Posted at 16:23h, 14 March Reply

    Jessica, I’m sorry you received this negative feedback, and that you did not get the respect that you deserved from CBC. I am very grateful for the work that you do to help people understand ostomies. My son (Jacob – I think you know him from camp) is now 19 and has lived almost half his life with an ostomy. It saved his life. It made him feel more “normal” than he had before the ostomy. Suddenly he wasn’t sick all the time, taking medications all the time, having to worry constantly about sudden accidents, etc. He is also very slim, and his ostomy is not visible. When he was younger, we would meet with kids who were just told they needed to have ostomy surgery to help encourage them and show them that it didn’t mean their life was over. These are the stories that need to be told. Thank you for what you are doing to tell them, and please keep fighting!

  • Julie Edwards
    Posted at 18:10h, 14 March Reply

    You are a great advocate of us (ostomates)! I thank you. Julie Edwards.

  • John Shafer
    Posted at 20:14h, 14 March Reply

    Sadly the woman doesn’t seem to truly see herself as beautiful based on how she lashed out at you, the work you do for us (the Ostomate community) and society in general.

    My bag is part of me. It fits on my “Dad-Bod”, shit-gun so to speak. It saved my life. It helped me to not get hung up on what others and society define as normal or beautiful or whatever and to be grateful for the life I live and for people like you Jess, who ride shit-gun like the rest of us ostomates, that work so hard to get the positive word out about ostomies to the rest of the world on your own time (and dime).

    Your story and site helped me to adjust to life with my little buddy and showed me that life is whatever we choose to make of it. It is a much better and happier life since I had my surgery.

    Thank you for fighting the fight and know that we appreciate all you and your team do.

  • Patrick Tobin
    Posted at 08:22h, 15 March Reply

    Jessica, my heart is heavy and hurting for you. I had UC for 20 years and had an illiostomy in ’07. It literally gave me my life back. All I knew was the location of the nearest restroom. A year after surgery I did 5 days on the Appalachian Trail. I found your website soon after surgery and it has been a godsend. I have directed several people there who were facing surgery. A friend of mine had colon cancer and had a colostomy and then had the ‘reattachment’ surgery. I recommended he stop with the colostomy. Now he has ED and is having to wear a pee bag dug to incontinence. During the second surgery some nerves got cut. When I was being evaluated for my surgery the surgeon was talking about a ‘J Pouch’ on the second surgery and said woe, woe, WOE! We’re doing this once and done. I am so glad that is past. 10 years this June.

    Keep up the fight and maybe you should think about starting a non-profit organization. I don’t know all the issues you would have in Canada. Something to consider. My prayers and thoughts are with you!

  • Bill Roy
    Posted at 16:36h, 15 March Reply

    Thank you for always speaking up!! You’re the best!!!

  • Joyce Boone Dilda
    Posted at 19:05h, 15 March Reply

    I have personallybeen fighting to.help.remove the stigma for 45 years as of June. Crohns, 5 revisions. I was originally in DC, where we had ahuge Ostomy Assoc chapter. We put up booths at health fairs, I was very active.Our signsaid Ask me what an ostomy is. Then moved to Dallas for 10 years, again a large chapter. I was State Rep, traveling to rural areas to helpeducate.Am now 72, have steroid osteoporosis from all the Pred. And still fighting the same battle to educate the public. It is exhausting. This past year I have noted that people who are angry about something describe the target as a realcolostomybag. And I do aslow burn, always respond to stop using something life saving as an insult. Good luck in your quest, but as I first stated I have been at it for 45 years. And I continue to be amazed at how many doctors are ignorant about our altered anatomy,our absorption issues,onand on. Thanks for your efforts. Honestly I think.we reached more people before social media. Contact me anytime.

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