Every now and then I fall apart…

If you aren’t singing Total Eclipse of the Heart by Bonnie Tyler after reading that heading then what are you doing with your life? 

Ok, enough 80s awesomeness. I’m not feeling awesome. And that pisses me off. 

After 3 1/2 years of surgeries, scars and ostomies I have gotten used to this body of mine. More than used to it, I’ve learnt to feel proud and brave and strong. I’ve learnt to love it. 

Yet every now and then I fall apart. It’s a weird one as I do genuinely love this body of mine, fucking hell I talk about it enough. I blog, vlog, Instagram and tweet about it. I get paid to stand in rooms full of other humans and talk about it for fucks sake. But sometimes, just sometimes it catches me off guard and I feel shit. 

I was listening to the Guilty Feminist podcast (you should all go listen to this IMMEDIATELY!) and one of the women was saying that sometimes when she hears people telling her she should love her body she thinks ‘Fuck you! You don’t know my body, it’s a right bitch!’ and along with making me laugh, it made me think about how it’s ok for me to sometimes be thoroughly fucked off with my body. 

It let me down! It got sick. And this stupid kind of sick where it’s hurting itself! Auto immune disease means my body is literally attacking itself. It’s like when your older sibling takes your hand and slaps you with it shouting ‘stop hitting yourself, stop hitting yourself’ but there’s no old, mean brother or sister. You’re just slapping your own face. Stupid body. 

Then doctors fixed me by taking my bowel out and sewing up my arse hole.  Man, I miss farting.  My ileostomy is the end of my small intestine pulled out through the wall of my abdomen. On good days I say it looks like a rose bud. On bad days, I think of it as a scary leech face. 


I wear this bag 24 hours a day. And it’s literally the butt of every joke about something old, smelly or disgusting. Society thinks of colostomy bags (they’re usually not well informed enough to know about ileostomy bags) are gross, hilarious or downright disgusting. And that hurts. It hurts that most people see my illness as an insult. 

Even in the most well meaning of places I hear negativity. I heard someone saying that if they were about to be sexually attacked, they’d shit themselves. Because that makes you gross, disgusting and definitely not sexy.  As a woman who shits in a bag on my belly I can tell you that one knocked my confidence. 

I mean she’s right, shit isn’t sexy. (I suppose it is if you have a fetish in that!) but it made me think about how someone like me can be seen as sexual when every romantic liaison comes with an ostomy bag thrown in? 

Usually I cope well. Mainly because I’m fucking awesome. But every now and then I fall apart. 

Tonight I got out of the bath and changed my bag. I looked down and it caught me off guard. I cried. A lot. I sat in the bathroom wishing I had a pretty and perfect body. I’m a feminist but… (you’ll get this when you’ve listened to the guilty feminist podcast!) I wished my body looked like a woman from a magazine. 

Worry not, I’ve pulled myself together and reminded myself that even the women in the magazines don’t look like women in magazines in real life. I’ve reminded myself that there’s no point wasting time wishing this away, this is my lot now. I have no bum hole people! It’s not going to change!!! And if I ever get abducted by aliens then at least they won’t be able to probe me… 


I suppose this is why I do what I do. Why I speak openly about my illness and my body. Because though sometimes I fall apart, I have also learnt to live, thrive and kick ass with my body. 

I know how it feels to be let down by your body. How isolating and soul crushing it can be.  The road to self love isn’t all sweetness and light, no Kardashian is going to hand you a can of pop and make your world better. It takes time, work, sharing and looking hard at what you want. But you can get to a place of self worth and celebration. 

You just have to accept that even the most badass of people have times when every now and then they fall apart.

4 replies
  1. steven Nelson
    steven Nelson says:

    Had the operation over 17 yrs ago,went in hospital 210lbs came out 157lbs just a tad over 6ft tall. Was told it was crohns related,it really was cryptospiridium related in my eyes.Never sick before in 36 yrs,after the outbreak in Milwaukee in 92,had to enter hospital numerous times for over 3 years with symptoms, anyway i was damn mad and pissed at everything,but i was also slowly dying. Got even more pissed at wasting time being sick.Operation success,with the usual setbacks,got hooked on big time pain meds for many years.Over it, bottom line i did not want to die, set your priorities because its not worth hurting your family, friends, and most yourself.

    Reply

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