One of the reasons CC is open about dealing with Crohn’s Disease and having an ostomy is the possibility of helping others deal with their illnesses or to at least let them know that they aren’t alone in dealing with this stuff.
I don’t know how many times on social media groups, folks will share things and you get a ton of comments that say, “Yes! I thought it was only me who dealt with this!” This is the reason I think we need to share and support each other more. Sometimes we get isolated (literally and/or figuratively) with our symptoms and don’t realize that some things we deal with aren’t because we’re weak or lazy but part of the diseases we fight.
Most recent example that sparked this post was a meme about being worn out and feeling ill just after taking a shower. I remember a time when taking a shower was no big deal. That doesn’t take much energy or work, right? Fast forward to living with a chronic illness and you realize how much work your body has to do to take a shower. I’ve had times when I have to have a chair in there; I’ve almost thrown up or passed out just trying to clean my body and certainly have had to lie down and catch my breath/rest after a shower (even on better days I usually have to rest after showering). And the comments to this meme were basically: OMG! I thought I was the only one! Seriously, comment after comment of “Wait, this happens to other people too?!”
I’ve dealt with the feelings of frustration/anger because I think I must just be lazy because I just can’t get up and do the dishes or fold a load of laundry. I always have to make myself take a step back and realize that most likely, I’m not being lazy. Because I know the days when I do feel better and don’t deal with a lot of fatigue, I get shit done. I’m doing the dishes and the laundry. I’m going out and socializing. I’m working on projects. So, if I’m laying on the sofa without the energy to take the trash out I self-evaluate. Am I procrastinating/just don’t want to do it OR do I seriously not have the energy to do this? Usually it’s the latter.
Dealing with this sort of frustration is probably the hardest to deal with I think because it’s your brain trying to sabotage you into thinking that you just suck and not that you’re just sick or dealing with your condition(s) which often have a wide variety of symptoms.
But, what this long, rambling post is getting at is to share your stories and experiences with others. Friends & family – and if they’re not supportive, find a group that is. Whether that group is online or in person. Because if we don’t share our stories about what we deal with we end up thinking that we’re the only one dealing with crazy shit – but the vast majority of the time, we’re not the only one.