So, I have Crohn’s disease and it’s not pretty. There is nothing glamorous about having to spend most of your time in the bathroom praying to the ‘porcelain gods’. But it is a reality for me. I have to share some very intimate details about my body and my life with my doctors, get lots of tests done like ultra sounds, cat scans, MRI’s and colonoscopies… I mean seriously, thrilling stuff!! Lol. Needless to say, not much privacy there. But just because Crohn’s disease (CD) isn’t “pretty”, does that mean we shouldn’t talk about it? No– I don’t think any of us should be ashamed to talk about this disease and what it does to our bodies or our personal lives.
I’ve come to learn over the past couple years, that a majority of people, know very little about what CD is because no one is talking about it. The awareness goes as far as the name of the disease and then it really stops there. About 90% of the people I talk to know someone with this disease, but know nothing of what their friends, family members, or co-workers are REALLY going through. I myself, before being diagnosed, had “heard” of Crohn’s, but I didn’t know exactly what its effects were. I wasn’t prepared for what was going to happen to me, emotionally and physically.
I think we need to start talking about what we are going through– what exactly it’s like to be diagnosed with an incurable disease. If not for the sake of awareness, then for our own therapeutic purposes.
I obviously want to raise awareness for CD, I just feel like it is something I need to do. I know there are many people that misunderstand how serious CD is, including some patients even! I want to change that! Some still think, “Oh, but there are treatments for Crohn’s disease!” Yes, there are treatments, but there isn’t a CURE!! Not yet! Meaning there isn’t anything to stop this disease from flaring over and over again through our lifetime. It isn’t dissimilar from cancer. In fact, I am usually sitting right next to someone getting chemotherapy when I get my own infusions. Treatments, don’t necessarily make this disease something easy to live with. Actually it is quite the opposite, treatments usually cause a plethora of unwanted side effects, are high risk, don’t work or just decide to stop working! Nothing really easy about any of this unfortunately! So I want to share as much as I can about my own experiences to spread awareness and help others understand what we are going through!
Why should YOU talk about it though? Maybe next time you have to call off work, your boss will be a little more understanding knowing you are dealing with a chronic illness that is unpredictable. Or perhaps when you can’t make it to family dinner, you won’t get a guilt trip from your siblings or parents, as they know you are suffering. Maybe your spouse won’t judge why you have to get 10 hours of sleep every night! Ha ha ha–I said ‘maybe’!! Or maybe, your friends won’t take offense when you can’t go out to eat, because unfortunately you have to drink your meals while symptoms are flaring, lol!
So why not? Let’s speak up! Every time I talk about what I’m going through I feel like the disease has less of a hold on me. I’ve noticed the more I share, the more others do too! Nothing makes me happier than to see that happen! Once we have a conversation going, we have a support network! There is nothing more reassuring than just knowing you aren’t alone in this. It always puts my mind at ease when I hear someone else’s journey with CD, because I know they are facing the same challenges as me or worse. If they can do it, I can do it! And if I can do it, YOU can do it! If you can do it, so can your Aunt, niece, father or best friend!