UC to J-Pouch Story

Communicating about UC

Posted by mark on July 6, 2008

   WEBCAST: No One Understands My Pain: Communicating about Crohn‘s & Colitis

Health Take has offered a very good webcast on how to talk to others about the disease you are living with.  The webcast especially addresses how with these diseases we often look “fine or healthy” but we are not.

“Often when you’re suffering from painful Crohn’s disease or colitis symptoms, you may look healthy and others may assume you feel better than you do. So how do you ask for the support, understanding and help that you need?

Join us as our expert guests share tips for effectively communicating about your Crohn’s disease and colitis pain and other symptoms with your family, friends and others in your life. From informing a co-worker about a difficult symptom to expressing your needs to a spouse or new love interest, you will learn about techniques that will help you feel supported and empowered. Plus, you’ll learn why it’s important for your emotional health that you speak up and seek assistance.”

Communicating with family, especially my family was EXTREMELY difficult. They just didn’t, couldn’t understand chronic illness and what it really meant.  When you have UC  “are you feeling better today” has a whole new meaning.  We wrote our story of support and have put it on here for Our Story of Support.  Part of this blog has been to help others communicate their situation better. 

BLOG POST FROM LOTTIE in the U.K., she is headed into surgery at the end of the month and on her blog (which you should check out http://lottie30.wordpress.com/) she wrote the following post that made us think more about “communication”

“Talking to Megan and Mark about support etc and reading their take on it, made me realise that very often unless you ask you don’t get.  With this in mind I took an unprecedented decision to speak to them about it properly.  It is impossible to get my brothers and sisters in one place at once, especially as one lives in Sydney, so I emailed them all (and their partners/husbands).  I explained that I was having the op, what it entailed and more importantly how I felt about it.  I explained that it was a scary time for me and N and the kids and that we need their support not their sarcasm or dismissiveness (which is what I would normally get).  In response I have had some of the most lovely messages I have ever had from my brothers and sisters, which have made me feel loved and cared for by them like I never have before.  It is really special.  It has made me realise that yes, you definitely have to tell people what you want and then you might get it.  I feel supported in a way I never have before and that is an amazing feeling.”

Photo by: Jake Shears


One Response to “Communicating about UC”

  1. Megan said

    My family accepted and supported Mark wholly, it was his family that would tell him “Hope you feel better tomorrow” – inside I was screaming, “He isn’t getting better, he has a chronic disease people.” Then I realized people don’t understand what chronic disease means, I figure it took us years to grasp what it really meant and it was right in front of us daily.

    My opinion is this, Mark’s family even after surgery thinks everything is fine, problem solved, whats the big deal. But now they’ve learned about our community and our struggles through our informal online communication. When we made the blog it was as if lightbulbs just started going off in people’s head – “Oh, Mark is SICK”. Wish we had documented UC times like going to the Drs. and having another and another medicine fail (it takes a lot of medicine failures to get to surgery, as you may know). By documenting the surgery, our friends and family had a way to look and see what was real, there was no longer room for denial there it was, stoma and all. Now, it seems logical to us to think, Mark’s been sick for 7 years, and now he is having his colon removed and that is a big deal. Well, it was a big for his family, but they didn’t have ANY of the emotional tools or ability to cope with what it really meant, so for them it just didn’t exist and Mark let them hide from it as well. But eventually we learned we had to educate them on it in a very bold way.

    What was so funny about educating them about meant being honest about things like “Mark has accidents” – I remember Mark was working outside with his Dad and Mark was up on a forklift that I was operating and I had to bring him down – he’d had an accident. I knew by the look on his face. His Dad had NO clue, and was waiting for Mark to come right back, and I said “John, its going to be a while Mark has to take a shower and deal with his clothes, Mark just S**T himself for the 2nd time today” . I would NEVER say something like that before, but I realized they weren’t getting the subtle signals and there was no more time to keep them sheltered- we needed their support and they needed to deal with our reality, as it was their reality as well, their perfect family has some cracks and I was the messenger of the bad news.

    What happened as a backlash though was once we shared everything with them, and they couldn’t hide anymore, then we started having to support them. His Mom would call me crying (one call was “I didn’t breast feed him – do think this made him sick?”), and they were WAY behind us in coping with the disease – it was amusing to watch them go through all the phases of realization. I mean we are at year 6 of UC, now prepping for surgery and his family is still asking “Should he be eating that” – hahaha, yeah, if he doesn’t eat that he is going to be FINE – we chose surgery b/c it was the easier option than changing his diet???!!!

    My advice to anyone in this situation is to stop being subtle, and get the family on board b/c your support system is going to need their support while they are supporting you through surgery.

    Also, I knew his friends wouldn’t really call while he was in the hospital, so I called them and said “Call Mark” and they did but one replied to me “I didn’t want to call I thought I might be bothering him”. What I realized is that unless people have experience with this stuff, they need to be educated on how to help support us through it.

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