Crohn’s and Colitis awareness week 2016 is almost over, so it’s about time I wrote a blog post for it!! There are so many pertinent topics when it comes to inflammatory bowel disease (IBD) … what to write about?! I’ve decided to focus on awareness and understanding.
I often hear people say “we must do more than just raise awareness. There needs to be understanding too”. This got me thinking … Both are important! Awareness is one thing, and must come first. Understanding is taking that awareness to the next level.
You can tell someone you have Crohn’s, but what does that actually mean? As patients, we know our diseases inside out. Sometimes we forget that others don’t! I am guilty of telling someone I have Crohn’s (making them aware) without giving them any information to be able to appreciate or recognise what that entails. How can I expect them to understand?!
There will always be some people out there who are embarrassed and don’t like talking about bowel function and toilet habits, but hey, we all do it! It’s perfectly natural and HEALTHY to talk about!
Worldwide, people are much more AWARE.
The fantastic thing these days, with the amazing work of organisations like CCUK, CCA, and CCFA, and all the bloggers and patient advocates out there, is that a lot of people now know about IBD. You no longer say the word Crohn’s or ulcerative colitis and have people stare at you blankly. Many people have at least heard of it, if not know someone with it.
We’ve now started making huge inroads into raising UNDERSTANDING of IBD as well.
I’ve seen posts shared for awareness week on a range of topics from the many and varied symptoms of IBD, social implications, and mental health issues, to medication side effects, potential surgeries, and living with an ostomy.
People are sharing their very personal experiences, thoughts, and emotions, which is not always easy, but each time we do, it opens the dialogue and contributes to growing knowledge, empathy and understanding of IBD and the huge impact it has on so many different aspects of peoples’ lives.
Some would argue that unless you have personal experience living with IBD, you can’t possibly fathom exactly what it is like (plus it is very individual and different for everyone). This may be true, but I think we’re doing a bloody good job trying!
The difference between awareness and understanding of IBD doesn’t just apply to the wider community, it applies to our family and friends, and even those of us with IBD.
Here are a few examples:
- Don’t just tell someone you have IBD. Explain a little bit about the condition to help them understand what having IBD means to you. You don’t have to go into all the gory details if you don’t want to!
- Speak to your employer and your friends so they understand that whilst you might seem fine today, the unpredictable nature of IBD could mean that tomorrow you might have no choice but to call in sick or cancel your social plans at the last minute.
- Detail your major symptoms when you need to so family/friends understand that you might need to have an afternoon nap due to fatigue, may not be able to be as active as before due to aching joints, or may need to suddenly rush to the bathroom mid conversation.
- If you have a restricted diet due to IBD, clarify with your friends that you’re not just being picky, but you can’t eat certain foods or have an alcoholic beverage because you risk making your symptoms worse.
- Please understand that IBD can be a huge drain physically, mentally, emotionally, and financially. We may not always ask for it, but some days we will need your support or for you to just be there for us.
- Above all, explain so that outsiders, friends, and family understand that most of this is completely out of your control, is certainly not a choice, and is not your fault!
Just as important is self-awareness and understanding for those of us who suffer from IBD ourselves. I know that might sound strange! I hear some of you saying, “Of course I understand”! During periods of good health when your disease is not active, or outside of a flare, it can be easy to forget and become complacent. I know I sometimes do.
- Be aware of AND understand your body, signs of a flare or if anything triggers other symptoms. Recognise and try to avoid these – stress is a big one for me! Even if you’re feeling 100%, understand that symptoms like fatigue might still affect you.
- Realise that even though sometimes you want to push yourself to the limits, this is not always a good idea. It’s okay to have a day off or rest when you need to. Understand that some days you need to go easy on yourself!
- Appreciate that some days will be worse than others, but they won’t all be bad. There will be good days J Understand that times can get tough and sometimes it’s hard to maintain hope, but be reassured that you are not alone, and things will get better.
- If IBD causes you mental health issues like anxiety or depression, be aware of this, but understand that it is not your fault and you can get help.
- Be aware that Crohn’s and UC are chronic illnesses, but know that this doesn’t mean you can’t live a full and happy life 🙂
Whether you’re a patient, a care giver or you’ve never heard of IBD, there are different levels of awareness, and even greater levels of understanding and empathy. Whichever category you fall into, I hope this Crohn’s and Colitis awareness week has helped raise your awareness AND more importantly understanding of IBD.
For a list of some of the articles I have shared or come across during this week and some awesome awareness and understanding raising by others sharing their personal stories, please click here.
Photos sourced from Crohn’s & Colitis UK, Crohn’s & Colitis Foundation of America, Get Your Belly Out, Coloplast and Stomalicious.