I originally started this blog with the intention of it being a therapeutic outlet while going through some exceptionally hard times. I kinda failed, I guess, considering as my UC flare progressed over the winter and sucked me back into it’s hellish downward spiral I didn’t write at all. I was too consumed by everything going on around me to even think about self care. I somehow always avoid self care when I need it most. Totally backwards, I know. I’m pretty upset with myself about it but it’s not worth getting hung up on now. I’m here now… finally writing. That’s good, right?!
Having a chronic illness is something I don’t think will ever get easier over time. No matter what level of acceptance I think I’ve reached, or how much stronger I think I’ve become, there’s nothing as damaging to the human spirit as repeatedly being reminded that your body is attacking itself. There’s nothing as lonely as having an invisible disease where others repetitively assume you’re fine because you “look” okay. Hearing that your treatment is no longer working will never lead to a simple and comfortable conversation. Every treatment that fails just means I’m one step closer to possibly having surgery one day.
Sometimes (very often) I feel as though no matter how much I talk about my disease, and my emotional struggles due to my disease, it is never enough. As great as my mom and boyfriend are at listening I still feel like I always have so much more to say. Bombarding healthy people with my sick person thoughts and issues and worries and troubles exhausts me… yet I always feel like I’ve barely scratched the surface of things. I feel like I can never explain my frustrations well enough, even after countless hours of trying. A sick person just can’t make a healthy person understand. The only way a healthy person ever could, honestly, would be if they were sick too. And I would never wish that on anyone.
Sometimes (very, very often) I encounter people who think there is no more to ulcerative colitis than stomach aches and going to the bathroom more often than the average person. It can’t be that bad, then, can it? I wish it was that easy. I wish that fatigue, hair loss, weight fluctuation, body aches, severe abdominal cramping, skin issues, eye issues, and the rest of the list didn’t exist. But it does. Ulcerative colitis, just like most other auto-immune diseases, affects the body in a multitude of ways. Autoimmune diseases are not simple in any way, shape, or form.
Anyhow, back to the main point of this post… whether anyone actually reads this blog or pays attention to my new all-about-IBD Instagram shouldn’t be important to me. I need to keep reminding myself that pouring my heart out, even if I’m just talking to myself, is therapy enough. It is self care and self care is crucial at this time in my life.
Starting my new Instagram account @lessthanbutterflies_ is something I’ve wanted to do for a long time. I never spoke to anyone about it out of fear. My blog is something I could keep somewhat private. An Instagram account is something that people who actually know me in real life could see much more easily. And that completely, utterly petrified me. I have been made fun of for my disease before and it has broken my heart. I have been on the receiving end of many nasty comments and rude jokes made by people I thought respected me – people I believed had more compassion in their hearts. This made me think, “If my so-called friends could make fun of me, why wouldn’t my acquaintances or strangers and people I know even less? If friends of mine could be cruel, why would people who know me less care at all about being mean?” Every time I thought about starting my new Instagram I would shut myself down. I would tell myself people would make fun of it. They would call me dramatic or say that I’m doing it for attention or something like that. The tricky thing is that when you don’t talk about your disease people ignorantly believe you’re totally great (cough cough, invisible disease). On the other hand, if you talk about it too much for their liking you are thought to be negative, a complainer, throwing a pity party, etc.
Finally, after about a month of doubting myself, I read something and my perspective shifted entirely. I recently picked up a book on sale in Barnes and Noble titled “The Little Book of Awakening” by Mark Nepo. I was taking a relaxing, eucalyptus-infused bath the other night (yay for self care!) when I came across a chapter in which Mark talks about living a split life – one where you hide your true feelings and beliefs and do not honor them out of fear. This really hit me hard. What he described is exactly what I was doing. And I felt ashamed. To start a blog or Instagram or any kind of social outlet to discuss and come to better terms with my disease is NOT being dramatic or an attention-seeker. It is me honoring my life. It is me honoring my daily reality. My daily life can be rough and sad and awful at times but it IS my truth. I should not ever feel as though I have to hide my truth because it may make others feel uncomfortable. Mark says, “We each have a divine inner voice that opens us to truth and a mediating social voice that is reluctant to show its truth to others” (pg. 42). I no longer want to be reluctant or afraid. I want to be brave. After my bathtub revelation, the sunset reassured me with a double rainbow in a purple sky. Considering purple is the color for IBD awareness, I took it as a sign from the universe.
Social media has been an amazing platform in allowing me to read blog posts and follow Instagram accounts of other IBD warriors. Certain stories and photos that I have seen posted by other survivors have helped me so much in terms of validating my feelings about my own healthcare journey. Sometimes I curse the internet, but most times I thank it for keeping me alive and afloat and giving me purpose by realizing that I am not alone.
Here’s to embracing this blog after a bit of a dry spell, here’s to healing, and here’s to celebrating my divine inner truth.
To anyone reading this who second-guesses themselves as much as I do – I hope you, too, realize that your truth is valid and should never be kept hidden.