Crohns and colitis and loneliness

Melly76
Melly76 Online Community Member Posts: 5 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
I thought that I was the only person... Now nearly everyone I speak to knows someone that has Crohn's / colitis. It's crazy, the numbers are definitely wrong as there's sooooo many more of us than anyone knows! In fact...they don't actually know how many people have it, that's something we are hoping to get more involved with in the future but lots more talking before that happens boo! 

Support goes a super long way! Look how much of a difference making friends that understand makes. 

In our recent poll, the figures are like 85/90% of people responding have said they felt lonely or isolated. That's a whopping figure. So even though it might seem silly putting on social meet ups instead of putting every penny into research...turns out loneliness is a huge issue!
Well I'm sure you have a lot you can teach others, especially about resilience and the ability to keep going!
Take a moment to realise your strengths.....
Take a look at how you power forward through your pain.....
Give yourself credit for never falling at that first fence and getting up when you stumble at the third......

Be proud of how you handle your conditions.... 
You are incredible, resolute and bloody amazing..... 

Surrender is not an option.....

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @Melly76, and a warm welcome to the community! 

    Great to have you here, and thank you for sharing this with us. Loneliness is a devastating social issue, especially for disabled people, and we hope that our online community contributes towards helping people feel a little less isolated too!
  • Melly76
    Melly76 Online Community Member Posts: 5 Listener
    I want to help as much as I can. I've been there myself. 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Welcome to the community @Melly76
    I have ulcerative colitis and a permanent ostomy bag and I write a blog about it, I started it because I felt so alone and isolated, it is a difficult thing to deal with especially when it is a socially taboo illness!
  • Melly76
    Melly76 Online Community Member Posts: 5 Listener
    Yes it is a social taboo. Ive had crohns for 27 years and up to 6 years ago, there was no support or nothing and don't want people to go through what I went through 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    edited October 2018
    I completely agree! When I first had my surgery there were no UK bloggers talking about IBD and that's why I started So Bad Ass.  It is great that you are talking about it too and sharing support.

    Have you seen Crohns and Colitis UK?
  • Melly76
    Melly76 Online Community Member Posts: 5 Listener
    I am an admin on a support group on Facebook and been admin on there for nearly 6 years now. Maybe one day there will be a cure. I do have more disorders since I've had crohns. They all coming out now 

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