Why I wish I had an illness you’ve actually heard of…

Nobody wants to wish a lifelong illness upon themselves, but I do sometimes wish I could just say I have something like diabetes, celiac or arthritis…not because having those illnesses is easier, but because as soon as I say UC or Ulcerative Colitis, I get this kind of look…


I think it’s the ‘ulcer’ bit…

Not everyone’s reaction is this blatant, but for many, it’s as if they are imagining what must be the twisted, rotten, oozing state of my putrid bowels and recoiling in disgust (they’re actually squeaky clean BTW. I’ve seen them!). Either that, or they stare at me blankly and ask what the hell UC is?

Over the last year it’s gotten easier to talk about my private health issues, and although I don’t feel the need to announce it when I enter a room – if someone inquires why I was so ill last year, or comments how well I’m looking now in comparison, I have begun to explain more about the condition. I see it as a kind of education, because MOST people have no clue what UC is.

It’s exactly a year since my first flare cleared, and about the same time since my official diagnosis. This time last year I was in shock, utterly petrified for my future and worrying that my bowel was going to be the death of me.

I worried about a LOT of unnecessary things in general, and when I’d been ill in the past (any kind of illness), my first conclusion was always to think that something must be deeply wrong inside me, and of course it was life-threatening. Until last year, I was always proven wrong.

So, to be told actually you DO have an autoimmune disease, we DON’T have a cure for it, and if it gets really advanced it CAN kill you. It was almost a twisted ‘I told myself‘ moment.


Oddly though, the process of accepting this illness, and sharing it with my close friends and family, has been a huge part of helping me to move on with my life and realise that I’m not invincible, but at the same time  – I’m a lot tougher than I previously gave myself credit for.

In a weird way it helps me to gauge how stressed I should get about other things, for example:

  1. I get thrown under a bus by a colleague at work  – NOT a life sentence
  2. Someone bitches about me behind my back – NOTHING compared to my bowels kicking up a fuss
  3. I pinch my back-fat and cellulite thighs in the mirror – AT LEAST you’re out of bed today

When you compare mundane daily problems to the tidal wave of a diagnosis that hit me last December, suddenly it doesn’t seem worth it to be upset about little details in life which really don’t matter. It almost makes me grateful that it happened…almost!

Looking at life like this also helps me to practice my mindfulness, something I want to write about more regularly.

So, for any UC readers out there – I’d love to hear how you’ve dealt with talking about your illness (if you choose to at all), and if you’ve gone through a similar journey to my own?

The important thing to remember, is that the more we hide our thoughts, feelings, illnesses, trials and triumphs – the harder we’re making it for ourselves to accept who we are and enjoy who that person is.

7 thoughts on “Why I wish I had an illness you’ve actually heard of…

  1. so glad i saw your post. that picture of the look you get is soooo funny but true. according to my doctor its a common disease, yet nobody i know knows about it!! after i nearly died( of the pain and flar up) and was told i was about to loose my colon , i changed my mind set. I refused to go on wheat& gluten free or Whites only diet. My doctor prescribed azapress and i’ve been drinking 3 pills each day, continued my normal diet ( eating pizza and burgers) and excercise daily. I cut cigarettes completely and my live changed. Its now my forst a flare-free year. After 2 years of constant pain and flare ups. Pentaza did not work at all for me.
    I guess a positive attitude helped me more at the end of the day.

    Liked by 1 person

    1. Definitely, I strongly believe that our mental health and attitude has a huge impact on our body, and I don’t think you can heal until you stop stressing so much about it and try to relax…which is easier said than done with an illness like this! I haven’t really altered my diet too much, but I do try to be healthier overall – less booze, less takeaways, more exercise! It all helps! 🙂

      Liked by 1 person

      1. Guess that’s like anything really! Have you also read my recent review on the book called ‘Gut’ it’s a read I’d really recommend for anyone wanting to learn more about how their body works, without confusing language!


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