I am Real. - Uncover Ostomy
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Uncover Ostomy Jess I am real

I am Real.

Edit Nov 4th: Mashable is now saying that Essena is asking her fans to give her money directly because brands will not. This just keeps looking worse and worse, doesn’t it?

Edit Nov 5th: We’ve been featured in The Daily Mail!

The other day, 18 year old Essena O’Neill, an Australian social media star, came out and admitted that her online, perfect life was making her miserable and that she was shutting down the social media empire she built and quitting social media.

Before I get into what I’m about to say (isn’t that how all great posts start? Ha), I have to give Essena the credit she deserves for being an insightful 18 year-old. She recognized that what she was doing was making her unhappy and she changed it. She is living her truth and that’s awesome – we should all be living our truths and doing what makes us happy.

But I have a problem with how she has gone about this.

Essena openly bashes social media as a whole and generalizes it as an entirely fake form of communication.

On her own, new website, Essena writes:

Social media isn’t real. It’s purely contrived images and edited clips ranked against each other. It’s a system based on social approval, likes and dislikes, validation in views, success in followers… it’s perfectly orchestrated judgement. 

This is where I have a problem.

 

As someone who is taking the tools of social media and using them as vehicles for awareness, education, and to prove that an ostomy won’t stop me, I can wholeheartedly say that there are people out there using social media for what it’s meant to be used for – to send a message. I mean, look at #MyOstomyStory for eff’s sake.

There are many of these people in our own ostomy/cancer/IBD community. There are also many others in different communities spreading their own inspiring and important messages through these mediums.

Essena’s generalization of social media has clearly had a wide impact, as it’s made headlines around the world. This generalization, however, has also cast a dim shadow on the messages that are being spread through the very channels she discredits. By doing so, she is also tarnishing the messages that we’re trying to spread.

My biggest fear out of all of this is that people are going to start questioning the content that I share.

When I first started Uncover Ostomy, there were many people who didn’t believe that I actually had an ostomy (can you believe it?). Apparently, my stomach is too “perfect” and my ostomy is too low. To quiet the haters, I had to stoop to the level of taking pictures of me holding up signs to prove that I was, in fact, a girl with an ostomy. I even had friends of mine message these people and tell them that they knew me and my bag and I was a real person.

It was draining and, frankly, ridiculous.

Am I going to have to start doing that all over again?

Before I go any further, I’m going to level with you and openly and honestly admit that I pick and choose my words and my photos. Of course I do.

As human beings, we’ve been doing this since photography has existed. Have you ever walked into someone’s home and seen pictures of them from the time that they got food poisoning lining the entryway to their living room? Have you ever received a Christmas card with a picture of a family where Mom’s eyes are closed, Dad is sneezing, and the dog is licking the toddler’s face? No – of course not. We pose for pictures. We choose the good pictures. We use the ones we like. We always have.

What makes it any different on social media?

Yes, I choose the good pictures.

 

I choose the pictures of me when I’m in an outfit I love, I feel good about myself, and my ostomy is safely and securely hidden away. Leggings? No problem. A tight dress? Hell yes I want to show you that I can still wear one. I choose to post a cute picture of me and my fiancé where we both look as happy as we are and not the picture where he’s passed out on the couch (ok, that’s only because he won’t let me!).

I also choose to post the professional modelling photos of me sometimes with, and sometimes without, my ostomy showing. I am really proud of the fact that I can model with an ostomy, and also of the way I look in some of the pictures – shouldn’t I be allowed to share them without judgment?

And let’s not forget that I, (as do many others!) choose to post pictures of illness. I post pictures of me when I am in the waiting room for the medical procedure that I’m not looking forward to. I also post videos of getting IVs put into my arm, much to the chagrin of many of my friends who complain about it (you know who you are, haha).

What don’t I do?

I don’t post pictures of myself when I’m writhing in pain from a blockage. Who is there to record me when I’m throwing up from the lunch I can’t digest from the twist in my intestine? And why would I post a picture of me when my ostomy bag starts coming off? I need to change it – that’s my priority.

Yes, I choose pictures where I look and feel good. Yes, I put filters on them to highlight the areas of myself that I am proud of. And yes, sometimes I take a picture more than once to get the angle I like best – so what?

The person in those pictures is me.

My photos are real.

My stories are real.

My happiness is real.

My pain is real.

I am real.

 

I understand why Essena bashes social media. On her site, she continues to write how it was taking over her life.

I was lost to expectations, pressures and a fearful desire to be accepted. I was scared. I thought, ‘if other’s don’t like me, then I’ll have no value to this world.’ This way of thinking trapped me and killed my creativity. It was like I was enslaved in everyone else’s opinions of me… I overthought everything. I was miserable. Stuck. Uninspired. Angry. 

Maybe this was because of her young age or maybe it was because she did not have enough self-confidence to love who she was inside and out. It is important for other young girls, and guys alike, to understand that social media does not define you. This is where I think her message bears weight.

It’s not about the likes, the shares, the retweets, the comments.

It’s just about being you.

 

I don’t just run Uncover Ostomy, but I am in the digital media industry. I run social media accounts for other brands, I write strategies, I measure social data, I create content – I know how it works. I also know that there are people who are faking their lives on social media.

Maybe for Essena, it was all a charade.

 

But what I post on social media and the messages that I send are 100% real. The pictures are of me. The stories I share are happening or have happened to me. The messages I send are important to me.

I remember back when the internet was first getting big (ugh, that’s how old I am?) and anonymity was key. In order to prove yourself and that you were who you said you were (as best as you could), you had to take a picture of yourself holding a sign.

This is my sign.

I don’t know if this hashtag will take off, but I am going to try to use it as much as possible to remind you all that I am not making up some fantasy life. My life is in no way perfect, and I am the first one to admit it and post about it. This is just in case.

#IamReal.

Jessica Grossman
info@uncoverostomy.org
8 Comments
  • Mo Haque
    Posted at 17:08h, 03 November Reply

    Great post. The work you do with UncoverOstomy is incredible. I had no idea what a stoma was last December until I was told I would need one after a cancer diagnosis.
    I’ve had one since April and seeing your work breathes confidence in me that once all the chemo is overI can go back to an active and sporty life.
    #IamReal #YouAreAmazing

    • Jessica Grossman
      Posted at 17:09h, 03 November Reply

      Aw, thank you Mo! Hope you’re feeling ok!

  • Scott lederman
    Posted at 18:06h, 03 November Reply

    @Iamreal is genius. I have followed you for a while and you are doing great work normalizing a condition that can cause shame in people’s lives because we aren’t perfect. Well you are someone who works very hard to share yourself and educate others about how to live with an ostomy. And I have no problem with you pursuing a career in modeling and even using your site to promote yourself. By promoting all of you. Forget the haters, they will always be there, but we who support your efforts are there as well.

  • Colette Smith
    Posted at 18:06h, 03 November Reply

    Thank you for your awareness efforts. I’m real too. All 93lbs of flat stomach, hidden bag and full active life. You’ll never appease haters who refuse to open their eyes and think with their head. You arent here for those people, you are here for the lost and scared awaking to a new life and hope. Keep up the great work.

  • Joe Choquette
    Posted at 19:27h, 03 November Reply

    I am real too-my cancer and my life prove it every day!

  • Dana Villa-Smith
    Posted at 01:12h, 04 November Reply

    I don’t know you, or your story. But I am inspired by your view of this situation I haven’t even HEARD about, and I will spread your hashtag.
    I’m in a social community of writers, who lost one of our friends to suicide this year.
    We are all real. We. All. Matter.
    URL friends are IRL friends, and for me– right now they’re all I have. I moved to a new town, and have to start all over trying to make friends. But my fb community I’ve been with for two years! It’s NOT shallow and fake to have internet friends, or use social platforms. It’s been my lifeline, because like-minded, introverted, writer people come together in all of our Realness, and openly do Life together. It’s a wonderful thing to be apart of.

  • Jennifer
    Posted at 11:56h, 16 November Reply

    I don’t face the same challenges you do but I did have to question how this young lady went about her revolution and how she attempted to destroy an outlet for many people. I have no doubt that the amount of effort and time she put forth every day to craft a single Instagram post was exhausting but her experience is not mine. I tell the truth on my blog and social media channels. It’s not always pretty but it’s real and so are many of the people I’ve connected with through these channels. I also need to pause and question why someone who has preached about the “horrors” of social media would create a new online brand and then seek out financial support.

  • Ali A
    Posted at 11:21h, 17 November Reply

    When I first read Essena’s story, I was intrigued and proud of a young girl for realizing something in her life was causing unhappiness and putting an end to it. But then, yes. I realized that you can stop doing something that isn’t right for you without telling others to do the same. Social media does not adversely affect my confidence. I am not signing on Instagram and thinking that everyone’s life is perfect, nor do I take it that seriously. But I enjoy it, and I too am real – my IG account shows pretty pics because that’s what I use that platform for, however my blog is more real, raw and honest. Don’t tell me that social media is fake just because YOU were being fake. Great post~!

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