I remember this one time a few years ago, when I was at a person’s house for the first time. It was a party that I had been invited to, and I only knew one other person there. I was having a conversation with another attendee, when suddenly I felt a side stitch. I knew what that meant; I had indulged in a bit too much cheese, and I had to go immediately. However, the conversation was flowing, and I couldn’t find a comfortable spot to interject and excuse myself. So I sat there for 10 excruciating extra minutes, praying that I wouldn’t pass gas … or worse. Finally I couldn’t take it anymore and briskly walked to the bathroom to relieve myself. I had casually asked the host along the way where “another one” was in the house, since the main bathroom was occupied. So thankfully I was far enough away from the gathering that no one could “sense” what was going on.
As a person living with ulcerative colitis, these types of scenarios aren’t uncommon in new company. It’s hard to break the ice for that initial “Excuse me, I need to use the restroom.” I’ve lived with UC for 20 years now, and I still find myself getting caught up in that awkward feeling of Will they notice how urgent it is? Will they question why I couldn’t hold it longer? Will they notice if I go again in 10 minutes, just to make sure? However, once I break through that first-time feeling, it becomes easier, and when I get closer to people, it eventually becomes seamless and worry-free.
That’s just one reason why my friends are an integral part of my treatment plan; they just get it, and they don’t question it. One time I jokingly shared with my best friend that I feel funny using the bathroom at their house, and she stared at me and said, “Caitlyn, I don’t even notice when you do it.” Huh, you mean I build it up in my head to be a bigger deal than it needs to be? Shocking (not). But in all seriousness, I’ve taken great care and time in establishing who my long-term friends are and who gets to be that safe space for me to live freely with UC. It’s one thing to have doctors and a professional care team in your corner, but it’s quite another to have good, solid friends there too, loving you unconditionally when it feels hard to love yourself.
If I ever need to crack under the pressure of feeling limited by my UC, they adjust their plans to fit mine. If I’m feeling drained and want to hang out on their couch instead of at a restaurant, we’re getting takeout. If I just need to scream into something other than the void (usually by text), they listen, without judgment, and simply support me. And if I want to celebrate a major remission milestone (or a 20-year anniversary), they are cheering me on every step of the way. They don’t take my struggles on as their own, and I don’t want them to. They’re just there to witness me being a human. They sit next to me so I don’t have to sit alone.
Another more recent reason that I hold my friends in such high regard is because they keep me accountable. What does that mean when it comes to chronic illness? For me it means holding up a mirror when I need it. I’m an avid athlete, and I struggle with taking breaks or days off. Exercise is a lifeline for me, so when I voice that I’m feeling extra tired on any given day, many of my good friends know to ask, “Do you need to skip your workout today?” And I’ll be honest: most of the time I don’t want to answer that question, because most of the time the answer is “yes.” But that mirror they hold up, forcing me to really look at why I’m feeling exhausted, keeps me honest with what my body needs. I’m forever grateful to them for not only having the guts to ask me that, but to also support me no matter how I respond. I often fall into the comparison trap and feel like I’m “behind” other people doing the same exercises as me, and my friends always remind me of just how badass I am, moving against a chronic illness as much as I do.
For me my treatment goes beyond the prescriptions, enemas and tri-annual colonoscopies. Treatment also includes maintaining a realistic, enjoyable quality of life. Having friendships that hold your feet to the fire when it comes to rest, self-care and comfort makes that quality of life attainable and achievable. I’ve been rocking with UC for 20 years now, and every friend that’s come and stayed in my life for that ride has been nothing but supportive and loving toward what I choose to share or not share with them. While every relationship that we form in our lives is special in its own way, friendships – the good ones – are an extra kind of wonderful.
I was diagnosed with ulcerative colitis when I was 14 years old. Since then I’ve had two major flareups but have spent the majority of my time in remission. In July 2020, I made the great-for-me choice of going on anti-depressants, which has changed my life. My passion in life is to remove all stigmas around invisible illnesses and to empower patients to advocate for themselves and not live in any sort of victim mentality regarding their bodies and illnesses. They are part of who you are, not all of who you are. In my free time I enjoy spending time with my husband and friends, swimming, working out, reading and exploring new coffee shops. I’m also the new group leader for the Crohn’s and Colitis Support group here! I'm exploring that sober life too, one day at a time. 7/5/2020
caitlyn_smith