Today, May 19th, is World IBD Day! Today is a great day to bring awareness to Inflammatory Bowel Disease (IBD) and those illnesses that fall under this umbrella term – Crohn’s disease and ulcerative colitis. The Crohn’s and Colitis Foundation advertises this day each year and when I went to their website to see how I could get involved, I saw a map. This map really puts into perspective how many people suffer from these diseases all over the world. When I look at this, I feel a lot less alone but also scared that these diseases are becoming more common.
I often get asked what the hardest part about having ulcerative colitis is. I don’t know if there is one definitive answer to this question because there are many components to having a chronic illness and I think it depends on what stage you are at in life. Being someone who is young and in remission, the hardest part has changed for me. In the beginning, it was the symptoms which caused me to be bed-ridden and prevented me from living my young adult life. Now, I would say the hardest part is finding my identity and self-worth.
I recently saw this post from Rea Strawhill and I resonated with it. I have been thinking of writing a blog post on self-worth for a while, and seeing this pushed me to finally do it. It’s extremely hard to convey the sense of loss chronic illness patients feel when diagnosed and dealing with symptoms. Our identity morphs into something we never saw or wanted for ourselves. It strips away our sense of belonging. Just like Rea, I hate my illness for taking away my crave for adventure and spontaneity.
With a chronic illness, I always find myself erring on the side of caution. I have to plan well in advance for every occasion and ask myself all the “what if?” questions. It’s anxiety-inducing and a distraction from being present in the moment. I fear that I will never be able to fully embrace life and the goodness it can bring.
I also see myself as being damaged, broken, and unrepairable. Suleika Jaouad wrote in her blog that a woman with an autoimmune disease sent her a letter stating she felt like “a once beautiful vase that is cracked and marked down on the sale shelf by fifty percent” and wow is that relatable! Unfortunately, someone in my past made me feel this way and it has stuck with me ever since. It’s prevented me from being my authentic self around others and damaged how I view myself. I know I’m better than that, but it’s hard to put the thought aside when you truly are incurable. All I want at this age is to feel seen and respected. I know that others won’t fully understand unless they have IBD themselves, but showing care does go a long way.
It would be an understatement to say that my self-worth has been damaged because of my illness. It’s not something I like to talk about much, but I do believe that being vulnerable allows for growth and greater connection. Chronic illness does NOT have to define who you are or how you live your life. I think back on the past few months and realize that I’ve accomplished great feats regardless of my illness. I feel so grateful to be where I’m at right now – everything feels like it’s meant to be and I trust in that.
So this is IBD: invisible & painful & exhausting & stressful & incurable, but also empowering & challenging in all the good ways. If you know someone with IBD, be sure to check in with them today. Ask them how they are doing and demand an honest answer. Be present for them. IBD patients are the strongest warriors I know, but they are stronger because of the support from others.
PSA to my IBD warriors: Let’s keep kicking butt and raising awareness!