I do all of *this* alone.

IBD, it’s very isolating.

Let’s face facts: it focuses on your digestive system, about what it produces. You endure tests and investigations for answers for everything – from your diagnosis, all the way through to getting treatment and management plans sorted – alone. You don’t have anyone to hold your hand.

Well, at least I don’t.

I have done all of my IBD investigations on my own, bar a handful of times when someone was with me. 95% of my time, I go alone, not through desire but choice.

My disease, it is mine.

But goodness, its lonely.

 

I spent February 15th 2018 having two endoscopy procedures done. I was alone. I arrived alone. Despite how awful it was, how scared and anxious I was; I got through it alone. I was alone. It was only spending the night at a friend’s house, was I not alone. And as much as I can explain and talk about my time at the hospital, I will be alone. I spent the following afternoon, having my medication. I was alone there. I couldn’t fathom how I would ever ask or want anyone to come with me. Did I need the support? Did I need the chatter? Would it be too much for some? Who would want to sit with me for hours? 

 

I suppose how I reacted to having bowel disease, all the time ago in 2011; is some of the reason why I tend to go alone. I don’t mean to isolate myself but talking about poop and your bowel habits and movements; its always going to be … awkward? Embarrassing? Not the norm? Undignified?

Nothing about having IBD is glamorous or sexy.

 

I do my disease, my health; alone.

 

Doing it alone means I’ve had to be strong and stand up for myself every single time.

I’ve had to ask for what I need when I need it because it is down to me. It is all down to me. I want to take control because my disease leaves me feeling out of control. I have no say over when or where my disease will flare up, even with my medication. I have little control over when my stoma will misbehave and I definitely have little to no control over when my pain will strike me. All I can do is manage it the best I can. I can go to my appointments and get the best of out of them. The advocate I have become is because I want to do this alone.

Don’t miss understand, I now choose to go alone because it’s – for the most part – easier.

I do my disease, my health; alone.

But asking for help, that’s a difficult conversation to have. It’s a subject I don’t like to breach because… of what? What am I afraid of? Needing someone to see me at my worse, most vulnerable, in my every day reality? 

Yes, yes I am afraid of that.

For anyone else, talking so candidly about my health, the things I go through and what my debunked body produces; can be confusing – what sort of person talks about poop so easily? About being in hospital so without fear? About not feeling well and healthy so confidently? But I do choose what words I use and just how much I say. But allowing someone else to be in the same room for a consult – where I am at my most honest with a person trained to help me and my condition get better – that is overwhelming for me. So going alone, it just helps me keep some of my own journey private – between me, my body and my doctors.

 

This becomes abit blurry when I speak out about my health, and when I choose to continue my online advocacy and blogging. I am sharing details of my life on here. I share my highs and lows, I contemplate my condition and my abilities beyond my control. Part of me lives online, because I love the community that I am part of and can contribute towards. But I do find my IBD to sometimes be a double edge sword.

 

I do my disease, my health; alone.

 

Alone can be good. Alone can be comforting. But alone can also be a circle that is hard to break.

 

 

How do you cope with feeling isolated with IBD?

Do you have any questions or queries? Or just want to share your own experiences?

You can leave me a reply here or comment via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram