It’s not easy to put into words what daily life is like living with a chronic, autoimmune disease like Inflammatory Bowel Disease (IBD). The best way I can describe it is uncertain. I ask myself so many questions each day – questions that do not have a simple answer. “Why me?” “Are these random body aches a flare?” “Why do I have brain fog all of a sudden?” “Why can’t I let loose and be spontaneous for once?” If you don’t have IBD, you probably won’t understand this – but I’ll try my best to explain it.
I have experienced what it’s like to be in both a severe flare and remission. I have to admit that being in remission almost raises more questions. The most notable being, “Will it ever come back?” Every time I experience one small symptom, I’m thrown back into the dark memories of being in a flare. It wasn’t a good, nor fun time in my life. I NEVER want to get to that point again. It feels like I am still holding myself hostage and trying to break the chains to set myself free. The only thing holding myself back, is me.
It’s safe to say that I wouldn’t be able to pursue my career and master’s degree if I was as sick as I was three years ago. Each day I get home from work I feel an overwhelming sense of gratitude and relief that I can make it through the day without fifteen trips to the bathroom. That might sound silly to you all, but the toll this disease takes on your body and your mental state is huge. It affects every aspect of your life. I get so emotional when I think about how much of a struggle each day used to be for me, and now I have the opportunity to live a life I only dreamed of. How can you not get emotional about that?
Living with IBD – whether in a flare or in remission – is an emotional rollercoaster. Some days I don’t think about being sick, and some days I can’t help but dwell on it. Through this blog, I’ve added an extra layer of transparency in my journey and sometimes I have doubts about it. I fear that I will face judgement and discrimination because of my illness. It’s a level of vulnerability that isn’t always comfortable. At the end of the day though, I know sharing my story is helping other people. I truly believe that making this a more openly discussed topic will raise awareness and reduce the amount of judgement patients face.
To sum it up, daily life with IBD is HARD!! I am always fighting with myself internally and asking questions in my head that only produce worry and anxiety. I am working on positive self-talk and remember that I need to be kind and patient with myself. I have sticky notes on my closet door with affirmations that remind me how brave and strong I really am, even when I don’t feel like it. After all, we are IBD warriors for a reason.
I know some of you won’t fully understand what this is like, but don’t be afraid to ask questions and want to learn more. The IBD community can always use your support!