IBS and Talking About the Uncomfortable
I have never hesitated to share my lupus with anyone. I'm a very open person, and nothing was off-limits when it came to being an advocate. I'd talk and write about my joint pain, my struggles with medication, how it felt to contribute less within my household, my crippling fatigue, and anything else that might resonate with another person going through a similar situation.
However, I'm not sure that will be the case with irritable bowel syndrome (IBS). I was recently diagnosed with IBS-C (the –C means the type of IBS that causes constipation), and I've found it to be an entirely different beast.
Uncomfortable symptoms in more ways than one
Even though my joint pain can be extreme, hitting up to a 9/10 on the pain scale at times, talking about it doesn't make me feel awkward. The cramps and spasms that send me running to the bathroom, on the other hand, aren't as easy to broach in conversation. And then there’s what happens in the bathroom.
I struggle to find the appropriate boundaries when I talk about the latest way my body seems to be malfunctioning. Can I say diarrhea? Gas? What about bowel function? Do I contain these issues to my generally safe online community of chronically ill people who understand, or can I share this with friends and family as well? What about casual acquaintances? I don't know what the rules are in this new game that I'd rather not be playing.
Wondering where the bathroom is, again
I'm alarmed at how many times I have to rush to the bathroom a day. It's made me question the constipation part of the diagnosis; my doctor explained how constipation can sometimes cause diarrhea, but it's hard to wrap my mind around. And it's left me looking for restroom signs as soon as I enter a new building.
I'm familiar with this problem, as I developed overactive bladder syndrome 10 years ago in graduate school. Sometimes I'd need the bathroom every 15 minutes. I went to several specialists, and eventually, one urologist told me, "There's nothing wrong. This is just the way your body has chosen to respond to the stress in your life." I was confused and frustrated at the time. Over the years, I've mostly been able to quiet my bladder issues, and I've realized that stress does have a strong negative effect on my body.
It's one thing to tell my 3-year-old that I can't play with markers because my hands hurt too much to take the caps off (it's also easy to solve by switching over to crayons), but it's another to have to spend half the day in the bathroom.
I found being a mom with lupus to be incredibly challenging, but I also found a lot of ways to adapt to my difficulties. Being a mom with IBS, though? I'm not sure how to tackle it yet.
It's going to take time and creativity to figure out how to be a mom while navigating my IBS symptoms and flares. I do wonder about the more uncomfortable parts of IBS, however. My kids don't mind hanging out in the bathroom with me while they are little (in fact, I usually can't go alone), but that's not going to last forever.
Wanting to blame lupus
I can't help but see lupus as the villain. I always do. Somehow, I’m just sure lupus is the root cause of each new health problem. I know several people with lupus whose digestive issues have progressed to gastroparesis (where the stomach struggles to empty properly), and I worry about how things could get worse.
Worrying doesn't help, though, especially my worries over whether I could have prevented this. My health isn't completely within my control; all I can do is try to steward it well.
I only recently received my diagnosis, but these symptoms of IBS have been slowly surfacing for years, and the flare I experienced enabled me to get more information and start treatments that should help. Ultimately, it's good to have more knowledge about what's going on in my body and what I can do about it.
How much has the financial burden of lupus negatively impacted your life?