I ran across this article titled, "The Quiet Bravery of Showing Up." It is on the Girls With Guts blog and was written by someone named Emily, although I could not find her last name.
This is the first paragraph of Emily's article:
"It takes courage for people living with a chronic illness to simply “show up.” Whether this means going to work, getting out of bed, having coffee with a friend, or just existing in a world that doesn’t see their daily struggle, this is the kind of courage that isn’t visible to the naked eye. There is a disconnect between outward appearance and inward reality. Showing up, whether it’s physically, emotionally, or socially, requires energy, pain management, and emotional resilience that most people never see."
As I read the rest of her article, I realized that everything the author wrote about herself also could apply to me. (Except where she says she is not a quiet person and quite extroverted. I am introverted.) It's like we sat down together and had a heartfelt conversation and she wrote about our shared experiences.
When I'm in a flare, it is extremely painful and miserable because I'm losing so much blood, other fluids (diarrhea), and can barely eat. Of course, when I'm in remission, I am doing much better, including feeling better overall.
However, being in remission does NOT mean I am back to normal. While some UC patients do reach a high level of normalcy, I will never be completely normal again, energy-wise.
Perhaps the reason is because of my age. Most ulcerative colitis patients are much younger than me. It could be that my body and mind have difficulty dealing with BOTH UC and aging. Or I guess there could be something completely unrelated to UC going on with my body.
Regardless, I don't have the energy I used to have, physically, emotionally, or socially. My energy tank is much smaller than it used to be. Fatigue comes sooner in the day. (Actually, more fatigue.) Sometimes it feels like I'm emotionally flattened out and when that happens, I just can't handle a lot.
Socially, it is not any better. When I interact with people, whether it be family, friends, or acquaintances, depending how I'm feeling, even if it is with people I enjoy being with, I sometimes am counting the minutes until I can be home again. I could slide into being a hermit so easily. I do make myself interact with others, but sometimes, it feels overwhelming. I never know how I am going to feel day to day.
For example, a few days ago I woke up and felt okay. Not fully charged, but okay.
But as I started to do my virtual reality tennis on my VR device (my source of exercise), my shoulder immediately started to ache. I didn't do the tennis very long, and moved to the second exercise I normally do, but then realized that my arms felt heavy and were aching, along with my neck and shoulders. I cut my exercise session short.
In addition to my aching body, I also had slight nausea and my brain was kind of fuzzy. It felt like I had the shakes, even though I was not visibly shaking. Luckily, there was nothing I had to do that day so I just hung out on the couch.
But if there was somewhere I needed to be or had something that I needed to do that day, despite how I felt, I would have had to "show up." I would have looked just fine, but I was far from fine that day.
Keep in mind, I was having none of the usual UC symptoms. I am in remission! But when you have a chronic condition, your body is constantly on, constantly fighting. And I think that, sometimes, in one way or another, your body just semi-shuts down for awhile.
In her article, Emily says,"It’s one thing to show up physically, to be seen. But showing up emotionally? That takes a different kind of strength entirely."
That is the hardest part. Not being able to be there emotionally for loved ones and friends. For my husband, my sibling. My grown children. My grandchildren!
One of my hobbies is building Lego. I have several grandchildren who enjoy playing with Lego. I gave one of my granddaughters a Lego set for her birthday. She was thrilled. But then she asked, "Grandma, will you build this with me?"
Oh, how I wanted to say yes! How I wanted to pull up a chair and start sorting through those colorful bricks, while smiling at her anticipating face!
But, oh, how I could not. I was so tired that day, physically and mentally. All I could do was say, "I'm sorry, sweetie, but I can't right now," and sorrowfully walk away.
It's still a painful moment.
But that painful moment perfectly makes the point. When you have UC or Crohn's, showing up is sometimes hard, often hard. No matter how much you truly want to be in that moment.
Emily ends her article with, "The next time you see someone you love with a chronic illness who is “just there,” remember that they may not be feeling the best and it took a lot to show up."
I urge you to read Emily's article, especially if you have family or friends that have ulcerative colitis, Crohn's disease, or any chronic condition, for that matter. Here is the link, again. Her excellent article will give you a little insight into why your family member or friend acts like they do, backs out of some activities, and may even seem to be missing or absent more than you'd like. Believe me, they are missing or absent more than they would like to be, too.
© Colitis Senioritis 2026
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