Let’s Talk About IBD

I wanted to write something about IBD but I couldn’t work out whether I wanted it to be informative, factual, funny, or emotional. It turns out I just wanted to write something honest. I’m not sure if this is a post that many people will read, but I hope the people that do will appreciate that these are just my views, and not everybody has to agree.

I personally think that IBD is something that is not as globally recognised as it should be. I feel people shy away from talking about it because they find it embarrassing. I understand, lots of people would find it awkward talking about their toilet experiences, but for some people it isn’t just a day to day occurrence. It isn’t just a routine or something their body does on a normal time scale. IBD can take over your life. It can really, completely control you, and destroy every ounce of self esteem you once maintained.

It leaves you feeling not just physically, but emotionally and mentally drained. It can become so empowering that it consumes your entire lifestyle. It stops you going out, it stops you eating, it makes you anxious, nervous, it tires you, it disheartens any hope you could have of a normal lifestyle.

What many people fail to understand is that IBD is not just toilet troubles. It is not just constipation, diarrhea or stomach cramps… It is the thing that keeps you up all night, and leaves you heavily fatigued for the rest of tomorrow, it is the thing that makes you say “sorry, I can’t make it” to things you’ve been looking forward to forever. It is the thing that makes you late to work, that makes you stop 10 times before you reach your destination during a 15 minute drive. It is the thing that cancels your dates, because you’re too scared of what he or she might say. It is the thing that keeps you inside all day because you’re too afraid of public embarrassment. But on most of all, it is the thing that experiences too much negativity. Too many people not understanding. Too many people seeing it as an excuse.

I feel that IBD isn’t just known as a hidden disability for the fact that it is not always visible, but for the fact that we choose to keep it hidden. So many people won’t talk about it to avoid public embarrassment. To avoid misunderstanding and to avoid judgement. And I mean, that’s sad right? I don’t mean that in the “pathetic” sense, no, I mean it’s genuinely upsetting. It’s awful feeling that we live in a world where illnesses are only sympathized with when they are visible. I mean, it took me having a bag on my stomach for people to want to be there. People knew I was in hospital, yet no one asked why. As soon as people saw a large scar and bag on my stomach, they wanted to know. They wanted to understand, they wanted to sympathize. And yes, I am truly grateful for this, but it shouldn’t be this way. I mean, if I was to call in sick or cancel on someone now, people would understand that I’m recovering from what was a a very traumatic surgery. But if I was to cancel beforehand? Do you really think my boss would have understood the excuse “I’m sorry, I can’t come in because I’m scared I won’t make it in time..”?

How about we all take our heads out of the clouds and take a few minutes to learn about IBD, to learn about Ostomy’s and to learn about the dangers. It doesn’t just effect people like me, some people are incapable of dealing with it. And that’s not right. It’s not fair. We should be helping them deal with it. Treat people how you would want to be treated. Imagine being ridiculed for an illness that truly took over your life. Imagine being made to feel more alone in a world you already felt you had to hide away from.

Just imagine, and think, and learn. We should all be a little more open about IBD. Because it really would make the world of difference.

2 thoughts on “Let’s Talk About IBD

  1. Diane Darienzo says:

    Thank you…just thank you. I got an Iliostomy under a terrible emergency situation. End diagnosis was acute vasculiti s called poly arteritiss nodosa. I almost didn’t make it but miraculous my survuved. After 6 months of rehab and 6 more months home revovery,I have an amazing family support system! I went back to my teaching job.. At first everyone at work was supportive..now 3 years later it’s like they think it just all went awsy! I still have my Iliostomy bag, still get really tired some days. Only my closest friends understand. Because you can’t SEE my illness it’s as if it’s not there!


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