How I Was Yesterday Means Nothing Today!
As a person with ulcerative colitis, I have always had to be constantly aware of how changeable it is. I often live day to day, with no expectations of what tomorrow will hold.
Will I be so fatigued that I struggle to concentrate and get my work done? Will I be in pain all day or just some of it? Will it just be the niggling type of pain that I can half ignore, or will I be hunched over, unable to walk around properly?
I honestly never know.
Ulcerative colitis and Crohn's are unpredictable
I do know that doing something that takes a lot of my mental and physical energy will mean I have to rest for a few days after. I know that certain foods equal more pain or increased bathroom trips. Of that I am sure.
But beyond that... Your guess is as good as mine!
I wish there was an algorithm to predict what tomorrow will be like. I wish my actions on one day would play a role in the next. But it doesn't work like that, and accepting that was hard.
I might have a completely chilled weekend, expending very little energy in preparation for Monday, but then on Monday, I might be floored anyway! It doesn’t feel fair.
Effects on my relationships
It’s one of those things that has caused issues with my relationships in the past when I've had to cancel plans because I can't be far from the toilet, I’m in too much pain, or simply because the fatigue is weighing too heavy that day.
I have received my fair share of unwelcome comments from people that don’t understand...
"Well, you were OK the other day when you were in town all day."
I might have been OK the other day. I might have been OK yesterday. Maybe that trip to town pushed my body too far, but, it also might be for no explicable reason...
"You said you were feeling OK last week!"
Last week?!! That’s like a billion years ago when we’re talking about the health of somebody with an unpredictable, incurable disease. We can become unwell overnight. A flare can begin at any time.
"There are plenty of toilets around."
Toilets being "around" is not remotely useful when you have a five-second warning. I’ve had to dump shopping in the middle of stores and just run for a restroom a few times, and it’s not an experience I want to repeat if I can help it!
Understanding my UC symptoms are unpredictable
For a time, I felt a lot of guilt. I hated feeling like I needed to explain myself to people.
I hated feeling like the people that should know me and support me didn’t believe me when I said I couldn’t do something because I wasn’t feeling up to it. I didn’t want people to think I was the type of person to make excuses, and especially not the type of person that would use my disease in such a way! I didn’t want to feel judged.
Eventually, I realized that the issue wasn't actually mine.
I need people to support me and my IBD
Friends, family, and partners should be supportive and understanding. They shouldn’t question you and make you feel like you're in the wrong. They should understand that if we cancel a plan, it's because we needed to!
I cut those people out, and my life is all the better for doing so. It's a lot for us to accept as it is, so added external pressures and negativity are not something that we should have to accept. Think about it like separating the wheat from the chaff.
Have you experienced comments similar to these? Do you find that Crohn's or colitis has impacted some of your relationships? Share in the comments below.
Will you tell us what life with IBD is really like by taking our In America survey?
Join the conversation