I ‘speak’ to lots and lots of people online about colitis, crohns, ileostomies, j pouches and alllllll that comes with IBD. I think it’s really important to have the opportunity to talk to other people who have similar experiences to you. There’s nothing worse than feeling totally alone and that no one understands what you are going through.
I’m so lucky, my husband Timm is so understanding, he takes time to listen, he supports me 100%, he loves me unconditionally and makes me feel that my illness has no negative impact on our relationship. I couldn’t ask for a better partner… But he just cannot understand what it’s like exactly.
Last year a friend told me about one of her friends who had IBD and surgeries and said if I wanted to she would hook us up. It was a bit of a hectic time and though I was interested, it just didn’t come off. I emailed him but think I got the address wrong and the moment passed with me focussing on recovering from surgery.
Then this year through the mighty power of twitter we finally managed to start chatting. And I realised that having a personal friend who “knows” makes a massive difference. We’ve not met in person, but chat privately online quite a bit. He knows what it’s like because he’s been there. We can laugh and make totally inappropriate jokes about arses without the fear of making someone feel uncomfortable. I think he may be my IBDFF…
In the interests of privacy, we decided on aliases, and so he is the CrapBag to my Princess Consuella Banana Hammock… It works on many levels as he has an ileostomy bag and I have a pouch, plus we are Friends geeks and it made me laugh.
I think talking and support is key to getting through living with chronic illness, honesty with your nearest and dearest is a biggie. I’m so bloody lucky to have Timm, I can’t even describe how much easier he makes my life, he fills it with love and joy and makes me so happy (blerkkk… soppy alert) and he’s the one person who makes everything ok.
So I think it’s good for me to have another person to talk to, to share the load and not always be putting my thoughts onto Timm’s shoulders. I’d like to think I help CrapBag out too.
I think it helps that we have a similar sense of humour, things in common apart from the bad asses and a mutual friend so it doesn’t feel too weird.
What do you think? Do you have an IBDFF? Who is your support system?
Would some sort of buddy system help you get through the rubbish times and give you someone to share the good times with?
Let me know about your #IBDFF