I just recently decided to join a group on Facebook that is directly dedicated to the management of Crohn's, Colitis, other forms of IBD and IBS.
I am actually quite enjoying this group - people are friendly and understanding.
What I find heartbreaking is that SO many of them are struggling so much and don't seem to have much support from anyone in their lives other than this online community. Furthermore, a great many of them seem to have a very little understanding of their own disease, the tests and procedures to monitor their disease, and medications. It almost seems as if they haven't been properly educated - through no fault of their own (but this is all speculation).
One of the most prevalent feelings that the community has is fear. Fear of what the disease could mean for them, fear because not one person has the same presentation and therefore experience does not equate relevant advice (since nothing works exactly the same for each person), and fear of doing anything.
I have seen several posts about individuals being scared to eat (which is common), scared to go anywhere outside of their own home, scared to move, scared to go on a holiday, scared to do anything at all.
THIS to me is absolutely tragic.
I get that way too sometimes... But it's always good to try and put it in perspective. For a long time I held this view:
If it is not going to deteriorate my disease further, if it is not going to pose a threat to my life, and if it's something that is really important to me and I want to do it, then I am doing it!
The questions I would always ask myself are whether it is going to actually make my disease worse, if it is going to be life threatening or just simply painful, am I going to miss out on anything else by doing it, and is it going to hurt someone else? Am I going to suffer more than a flare-up? The most important question: is this going to improve my quality of life - is this going to make me feel happy, accomplished, proud, and give me that little bit of normalcy that we all crave?
People with any chronic illnesses still have to live their lives. It is pointless to continually live in fear. Letting a disease hold me back feels like I am giving up. I will never give up.
I find it tragic that so many people are so frightened that they are scared to do anything at all. Don't get me wrong - it is an absolute justifiable fear and I don't blame anyone for feeling this way. Sometimes it is just necessary to put things in perspective.