My response to the bully on Twitter making fun of ostomy bags

Bullying. Think of it however you want. What do you envision? Has it happened to you? This morning while feeding my son I was casually looking at Twitter. I was absolutely flabbergasted and appalled by tweets made by a “journalist” with 46,500 followers about a woman with an ostomy bag. I personally do not have a bag, but I know many people who do. And the hateful, hurtful and shocking words made me feel sick. In my twelve years battling Crohn’s I personally haven’t been targeted by hateful banter, but it’s so sad to think others with chronic illness are targeted. Here are some of the tweets (that have now been taken down-excuse the language)…

“She can’t help but talk shit. She has such a problem w/ shit in her body she has to wear an ostomy. Being full of shit is her actual illness.”

I could care less about her or her illness. She doesn’t deserve my sympathy or respect. Sucks for her.”

“I’m not the one w/ a shitty hole in my stomach virtue signaling about how my stomach hole is cute. Why lie to her & tell her it looks good?”

“I’m not making fun of her. I am making a factual statement. She is actually full of shit. Ppl who are walking toilets shouldn’t throw shit.”

“Your friends are lying to you. It isn’t attractive. When you post pics like that you’re just asking for a confidence boost.”

I think you get the idea. I’m not one to instigate or enjoy confrontation. As a journalist…and just a decent person, I’ve always done my best to steer clear of putting anything out on social media or my blog that could create anger, seem biased or one-sided. But, as a member of the inflammatory bowel community, as a voice for the millions who suffer in silence and as a new mom…I just can’t let this go.

I commend each and every IBD patient who proudly shows their ostomy bag like a badge of honor. You know what, you deserve to. What you have endured to get to that point and what you experience physically, mentally and emotionally each day is difficult for someone like me to comprehend.

When I scroll through social media and see men, women and kids in bathing suits or work out clothes and not hiding their bag in shame, it’s empowering. It makes me smile to know these people aren’t letting their disease or their personal situations hold them back from living a full life. Rather than hiding their bag or being embarrased, they are showing people all over the world that your quality of life doesn’t have to be destroyed or hindered because you go to the bathroom differently than everyone else.

Is having a bag ideal? No. Is choosing to rise above your struggle and not let it hold you down incredibly inspiring. Yes. So when you see tweets like the ones above, brush your shoulder off…drown out that noise and know there are millions of others who look to you as a hero. Shame on anybody who thinks otherwise and shame on the keyboard warriors who can spew such hate.

15 thoughts on “My response to the bully on Twitter making fun of ostomy bags

  1. KMH says:

    Wow, I cannot believe that. People can be so harsh and inconsiderate when hiding behind a keyboard. Thanks for posting this! Great way to raise more awareness

    Like

  2. Jacky Galassi says:

    People can be so cruel and hateful. It is so sad.
    When you have a disease it is not to your own choosing. Too bad the ignorant don’t understand
    this, and these tweets are definitely from the ignorant. Your article was very empowering Natalie and as always, so well written. I hope that someday people will look at a person as to who they are and not judge them as to their disabilities, as you never know, as someday the shoe maybe reversed. I hope this makes sense!

    Like

  3. Invisibly Me says:

    Wow, I think I’m at a loss for words. I only recently wore my first bikini and got my bag out, which I didn’t think I’d have the guts to do.
    The ignorance… I hope such a person would never have something like a stoma have to happen to them, because they’re obviously not strong enough to be able to cope.
    Brilliant post!
    Caz x

    Like

    • Natalie hayden says:

      I was at a loss for words, too–and then I realized I need to step up and say something. So glad you enjoyed my article. Keep doing you and be proud of all you’ve endured. Way to wear a bikini, so inspirational.

      Like

  4. JM says:

    At work every day we are trying to make these products better for the community that needs to use them, to try in any way possible to ease their situation. I’m always so inspired when I see pictures on social media. It’s sad that people have nothing better to do but send hate out into the world. Thanks for sharing Nat!

    Like

  5. Annmarie Valenti says:

    I’m so disgusted by ignorance by my own diseases as I”look” healthy. Ignorance runs in families as people with autoimmune need to wear masks to hospitals…BIG MASKS.. What is wrong with this world. Lord have mercy.. I am used to 20 yrs.I’m SORRY whoever you are for the pain that ignorance cause you in your heart more than your digestive tract.

    Like

  6. Dawn Meyer says:

    no there is no reason for what was said. It just shows ignorance on their part. I have to tell you something that happened to me. I have a colostomy and sometimes if your bag is full some of the gas will leak out and it does stink. I went into pay my cell phone bill and when I stretched for the door ( I am in a wheelchair) the smell came out and this woman was just carrying on “it smells like sh** in here and she actually walked out of the store because she couldn’t stand the smell it lasted only a minute or so. And I did not fess up to it being me, but, it was embarrassing. Because it couldn’t be helped at the time. But, I have always learned to laugh at myself when “accidents” happen if I didn’t I would never go outside my door.

    Like

    • Natalie hayden says:

      Thanks so much for your thoughtful response, Dawn. Can’t imagine what your day to day entails…it must be so hard to deal with on top of having to handle ignorant comments from those who just don’t get it. Laughing and finding humor is sometimes the best medicine of all!:)

      Like

  7. lupusmuslimahchronicles says:

    I am one of the very rare patients with systemic lupus erythematosus (SLE) who has been diagnosed with small bowel SLE two years ago which caused me to have a temporary ileostomy. The reversal operation was done in June this year. Reading this blog post makes me upset that such ignorant and disrespectful people exist in the world but hey it’s reality!

    I’ve seen so much negativity online that I’ve learned to block it out. These comments posted by this individual are just a reflection of themselves, nothing else.

    Like

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