It’s taken me 12 years to realise that I am never going to get better

Okay…here goes. *breathe*

Last week I dropped my cup of tea on my lap in front of a good friend and colleague. Instead of being honest to someone I trust and appreciate as a friend in my life, I lied and called myself a “stupid klutz”.

I should have explained to her that my hand was too stiff and in pain to hold my cup properly. I should have told her the truth.  But instead, I brushed it off and carried on. Since then, the pain has migrated from my hands, to my shoulder and now to my hip. It’s been like this since last year July.

The pain is so intense that it has left me crying my eyes out at night, unable to sleep. I use an infra-red massager to ease the pain. I’ve had to ask someone to give me a lift home from work on two occasions because I cannot open my hand to hold the steering wheel to drive home. KK has had to undress me some days because I am unable to lift my arms. I don’t know what to eat anymore because my diet is so restricted, yet I continue to put on weight due to the cortisone I am taking.

I am a fake. I am a liar. I am absolutely miserable.

I am tired of hiding something that I realise will never go away.

12 years ago, I was diagnosed with Ulcerative Colitis. Just when I had managed to gain control over the disease in my body, last year, the inflammation spread causing me to develop Enteropathic Arthritis affecting my joints and causing me crippling pain which migrates throughout my body.   

I don’t tell people I have an incurable illness. Firstly, most people will not understand exactly what I have. Secondly, unlike other illnesses, my symptoms are not something people want to hear about: bleeding ulcers, bloating, diarrhoea, crippling arthritis, pain…

I never see any glamorous running races to raise money for the Ulcerative Colitis or Enteropathic Arthritis sufferers. We don’t get a bright coloured ribbon to wear. It’s a lonely disease.

So I don’t talk about it. Instead, I hide it. I make as if it doesn’t exist. I hate it. I hate it more than you can imagine.

But I can’t anymore. I am tired of hiding it. I’m tired of carrying around this secret, this burden.

 I’ve come to realise that if I need help and support, people need to know what’s going on.

So that’s what’s going on.

I am in pain. I am weak. I am struggling to control it.

I’m scared.

15 thoughts on “It’s taken me 12 years to realise that I am never going to get better

  1. I am a relatively new follower of yours, and have only read this post today. My heart goes out to you. You are not a liar or a fake, you are just the opposite and I salute you. I have a friend whose 2 little girls have been diagnosed with a form of arthritis too, and they both have incredible pain. You can have a look at the FB page that has been developed for them if you’re interested. https://www.facebook.com/#!/groups/330407613714258/

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  2. Hi,

    For some reason I only read this post now. I dont’ think you are a liar or fake. Somethings just take more time to share than others. I think you are very strong.

    Pamela

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  3. You are so brave to get it out there. I want to give you such a big hug because of how scared you are. Now that you got it out there, you can be sure that you are not alone. Although none of your readers perhaps might not have your decease, we all now can support you through this, now that you have got it out there.
    We are here for you. I am here for you.

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  4. Bronwynne, you are such an amazing person, friend and inspiration to me. You should not carry this burden alone. We are all here for you. I really hope and pray that there is a way out of this pain soon for you. All the best and my thoughts are with you everyday.

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  5. I have tears in my eyes . I have always admired you! Always on the go, quirky, the clever tweets, beautiful smiling eyes. And now I admire you even more.
    Such a brave post. You are right most people have no idea what this desease is, but now I’m going to lOok into it, and educate myself on it.
    Well done on confessing and I hope this brings healing to your soul.
    I can’t wait for another tweet up!

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  6. What a brave post. I am so glad you shared it. I hope your pain eases, and I hope you find more opportunities to say “omg I’m in pain”. Huge respect to you, and lots of hugs (and Sprite Zeros)

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  7. I’m so sorry!
    That’s a HUGE first step, Bo.
    At least it’s out there now and you’re not alone anymore and your friends can better understand and help you. Sharing can definitely help relieve the burden.
    Take care xxx

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  8. Bron…I have no words! I knew a little about it, but not this. I need you to know…that although I can’t make it better…I’m here for you…even to help you clean up your tea 😉
    What an amazing post… You are not a liar or fake…in fact the complete opposite.

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  9. Wow Bron…I’ve always admired you for being an amazing and strong person. But after sharing this you have shed new light on how strong you really are!

    Just know that you have many people who love and care for you. And while we cannot do anything to take the pain away, we can do what we can to support you through the tough times if you allow us to.

    You’re not a fake. And you’re not a liar. You have the courage of a silent hero. You are someone whom people can look up to as achieving amazing things despite your condition. And makes you more than most people will ever be.

    ((HUGS))
    Sending you lots of healing love!!

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  10. Strength to you Bron! Often times when you have made the decision to share something this intense, the relief brings about a huge lift in you. I really hope that you are able to manage this process and that somehow you will draw strength and really enjoy all of the “good” days.

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  11. Bron – you have many people that admire you and will definitely support you. You are a bigger man that me, so to speak, I would not be able to smile so wide if I was suffering like this. I admire you for your courage and strength in dealing with the pain and in coming out and admitting it.

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  12. (((HUGS)))
    Hectic!!!
    I hate hearing that friends have pain (of any sort) that cannot be ‘cured’, that can only be ‘managed’ and at most not very well. I wish I had a magic ‘make-better’ wand.
    ((((HUGS))))

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    • Blowie, There is a promise of no more tears, pain,heartache or sickness which is given to us by Abba Father. I would like to say soo much more, but I know that you know all this and it is only by His strength that you have made it. It really churns me up knowing how you suffer. Hold on to this promise, you have an amazing resilliance and strength of character and are a great example to us all, my baby.

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