I’m Ready To Talk About My Invisible Illness

3 min read

For years Liv hid her illness. Now, she is opening up about her devastating diagnosis.

I was diagnosed with Crohn’s Disease when I was 14 years old. Now, 24, I have kept my illness so quiet that even some of my best friends don’t know. 

I have spent a decade lying about hospital appointments or vaguely dismissing time spent in medical care. I managed to explain my year admitted to hospital as a “bad tummy bug” and a “silly immune system”. I then spent ten years becoming an expert at changing the topic when people asked why I take so much medication or why I don’t drink alcohol. 

Them: Why are you taking so many pills?

Me: well some are just vitamins and this one is the contraceptive pill and then those are… OMG sorry! But look how cute that puppy is!

Them: Why don’t you drink? Are you sure you don’t want a glass?

Me: Jeepers! Look at the time! I’m going to miss my train.

I have been lucky to have found medication that works for me and for years my condition has been very well controlled. But the effects of my condition still have an impact. My body doesn’t absorb nutrients as it should. I am worryingly thin and people wrongly and inconsiderately assume I have an eating disorder. 

“Just put on weight”

“Just eat 10 doughnuts”

“I’d love to be in your position and be able to eat all day”

Crohn’s Disease

How wrong they are. With Crohn’s, if I ate like this, my body would not respond well.  If I attempted to put on weight by over-eating I would end up losing more weight. The food would go straight through me as if I had food poisoning. 

Unfortunately, due to my body not processing calcium as it should, I have recently been diagnosed with severe osteoporosis of my spine. 

Will I be able to continue to run without breaking my back?

I am heart-broken by this recent blow, especially as I am a passionate and competitive, long distance runner. Will I be able to continue to run without breaking my back? How will I cope without my mental release of lacing up my shoes and hitting the trails and the hills? Since I was 14 Crohn’s Disease has made me feel weak, fragile and broken. I am good at running and it is the only thing in the world I do that makes me feel strong. How will I cope without it? 

Why am I sharing all this with the world now? Why after 10 years of keeping quiet? 

I have suppressed so much for so long and I have felt so lonely dealing with my health challenges. I have been paranoid that if I spoke out people will think I am attention seeking. Seeking sympathy or getting special treatment is genuinely my biggest fear. But now, I realise that Crohn’s is a cruel and invisible illness. I realise perhaps there are other people like me out there. Finally, I’m ready to talk. With all the running I do some people see me as being the picture of health. I am not. In fact, I have been quite unwell. 

People also see me as being competitive. Which is true. So I am trying to see this whole “opening up” thing as my next challenge. 

crowns disease story

My declaration

Hi I’m Liv. I have Crohn’s disease and osteoporosis. I also love fitness and I’m a fairly good runner having run a 1.27 half marathon. I now need to put on one stone at least to be classed as a “stable” weight.  

With time, medication, further nutrition supplements, support and love, I hope this can be achieved. 

I need some time to heal now but when I am strong again, I will run a marathon in under three hours. That’s my goal. I’ll make sure it’s done.

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1 Comment
  1. Jenna says

    Thanks for sharing your story and good on you for opening up. To be completely honest if I saw someone quite thin like you I would probably assume they had an eating disorder. But you’ve opened up my eyes that there could be other possibilities. A really helpful lesson in not making assumptions that may be harmful or judgemental. I can’t imagine how hard it would be to have something like Chrohn’s, you are clearly a very strong person and have a great attitude. xx

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