It’s been 4 months since I had my ileostomy surgery. And it’s been a tough four months, mentally. I know I come across as being extremely confident with my stoma and I haven’t let it affect my day to day life, but in some cases, I feel it’s isolated me and there have been occasions where I just wish the whole thing hadn’t happened. These reasons aren’t really to do with my stoma either, but to do with how it’s effected my working environment and my relationships with people.
Before I had my surgery, I was working in media and spent my days in an office editing photos and dealing with press. It was fun – I’d always wanted to be a journalist and although I have written for a few publications, I hadn’t actually had any paid writing work. This job for me was a step up the ladder to achieving my goal.
When I was admitted into hospital, I lost my job. I’d had almost three weeks off of work due to illness and it had become a struggle to focus on anything else. I was also given 2 months recovery time after my op and when you’re working in media, most companies can’t afford that.
I didn’t want to give up my dream after being on my way there for some time, so I set up this blog. All I wanted to do was write. At first, this writing started off as therapy. I didn’t want to attend the support groups offered to me because I didn’t want to speak about it verbally. I have trouble doing that. I end up breaking down every time I talk about it. I’m not sure why I feel different when writing, maybe it’s because I’m given time to think about what I’m going to write instead of spitting out how I feel without a second thought.
My blog started getting bigger and bigger in such a short space of time. The media picked it up and wrote about it, and more and more articles started coming out – all over the world – in just one week.
I thought this would be great for my blog. I thought it would be great for others going through the same thing, it would show others that it doesn’t have to be a stigmatized subject. That it was just real life.
My blog was real, it was me. It was full of honesty. It was open, I had this aim to talk about every single thing people may fear. The things people may find hard to come to terms with.
But, to be honest with you, I feel the media exploited what I perceived to be a great thing.
They took this life altering thing that had happened to me and turned it into something seedy. Something the opposite of what I intended to do with my blog. They took my posts about sex, and the photos I’d posted of my continuous recovery, and one photo of myself wearing a bikini. The bikini that as I’d explained in a previous blog post, was worn to help me. I’d always struggled with my weight, and last year, I bought the bikini. The first bikini I’d ever worn. It sounds silly, but it was a big deal for me. It was the first step to me gaining some body confidence. And I was determined to not fall back into that lonely place of self destruction by wearing this thing that held those memories of confidence, so early on in my recovery.
Instead of talking about the recovery, why I’d chosen to write about these things, and why I was posting the pictures – they sexualised it, completed with a side of vanity and an added extra of stigma. “Selfies, Sex and Bikinis!” they said. Get over it, you may say. At least you got some recognition! But no.. that’s not how I feel at all. I felt hurt by these headlines. I didn’t agree with them at all. I wasn’t just “taking selfies” – I was documenting my recovery. Creating a time line of blog post photos to look back on, to see my progression. I wasn’t just “having sex” – I was writing about intimacy. I was writing about still being able to feel sexually attractive within myself. I was writing for those people that had gone through the same ordeal, that were struggling to find the confidence to regain some sort of sexual relationship with their partners, and those that were too scared to start dating again. I was writing to tell people that a life saving thing was beautiful, and was not something to be embarrassed or ashamed of.
The articles published were aimed at creating a “shock” reaction. They were screaming “look what she’s doing! Even though she’s got this!” Which of course created a whole heap of controversial comments, telling me to put my body away, that the thought of anything sexual with somebody with a bag was “disgusting”.
They created everything my blog wasn’t. They wrote in a sense that they couldn’t believe the things I was doing – because I had something different. I hate that. The whole point of my blog was to show I wasn’t any different. It was to show that my ileostomy bag did not have to change my life. It didn’t have to control me and it didn’t have to define me.
Some writers even took it upon themselves to question my blog pieces. Asking their audiences: “What do you think of her blog? Do you think she’s taking it too far?”
Well, to those writers who feel the need to question how I live my life, I think my blog is a great way to regain my strength and confidence. If doing normal things like any other person in this world is “taking it too far” I question your need for responses to make up your own mind. I question your integrity and I question your own confidence. Perhaps you could take some tips from my blog.
Hey, I know you’ve got a job to do, and I know that sex and “shock” sells. But just put yourself in my position for one moment, and imagine if you felt what you believed to be your good intentions were completely demoralised. My blogs about sexual relationships and feeling confident with your ostomy bag showing was taken completely out of context and therefore turned into “Hey! Can you believe she’s still having sex?!” as if I was invisible from the waist down or something! It also led people to believe I was posting about being sexually active with a number of people, forgetting to mention I was in a two year relationship – leading to a number of hideous comments about my parents being ashamed of me.
I loved my little blog before all of these articles. Before they (didn’t) take the time to research into my life before they wrote about it – telling their readers I was a student with a colostomy bag for life. Telling them that in order to live I had to “tape a bag onto my stomach which covered a hole that releases waste”.
In actual fact, I run my blog for a living. I left my studies 2 years ago. And I have an ileostomy bag – which is technically reversable. And I do NOT tape a bag to my stomach nor have a hole in my abdomen. It is merely a small part of my small intestine which is bought out of my stomach in order for me to go to the toilet. I change my bag twice daily and it is stuck on with a hole cut around the stoma to fit on nicely. It is not as dramatic nor as disgusting as you attempted to make it out to be.
It upset me that some of these media outlets felt they were raising awareness. When really, they were scaring more people into not talking about it. They made it sound gruesome, seedy and shocking. When it shouldn’t be like that. It should be celebrated. After all, it’s given me life. And isn’t that something to be praised? Isn’t that something beautiful?
There were of course some great articles that really described what my blog spoke for. And I can’t thank you enough for that.
But to the writers that took it upon themselves to not even contact me for the facts before writing these un-educated pieces, I hope a few hundred comments about how disgusting a life saving thing is was worth it for you. I hope you know that you nearly took away the meaning of my blog from me.
But, onwards and upwards after this post. I just needed to get it out because I’ve been feeling pretty down the past couple of weeks.
I know that my blog has meaning and I know that if it’s even helping one person, it’s worth it for me. It’s helped me, anyhow.