Family and Friends & UC
Like me, my dad has UC. When I was a child, I never really knew about his gut problems. I did know that he spent a lot of time in the bathroom. And that he always had a small plastic box filled with little white pills (Lomotil) conveniently tucked into a shirt or pants pocket. Back in the ‘60s and ‘70s, we just didn't talk about health problems like we do today.
It wasn't until I started having my own gut problems in high school that I became even remotely aware of my dad's health issue. That was when my mom told me that he was first diagnosed in the early ‘60s, about three years after they were married. They had two very young children (my older sisters) when he became so ill he was admitted to the hospital. His doctors told my mom to make sure all of “his papers were in order, just in case." She was just 25 years old and scared. My dad did get out of the hospital and, over time, regained his health. Even though he continued to have problems, I never once heard him complain, nor did he ever miss a day of work.
Then came the ‘90s and my own UC diagnosis. From the first time I told my parents about my diagnosis, my dad has always been supportive, but quiet. My mom is also supportive, but more talkative--she has IBS and we tend to compare notes. I think it's partly a male/female thing. But I also think my dad feels guilty that he can't help me, and just feels bad because he knows what it's like when I'm going through a flare.
Telling friends about my issue was a whole other story. There were friends who knew right away that something was wrong with me. My plummeting weight was the first tip-off. My lack of energy and socializing were the second giveaway, and the third, was the fact that I just couldn't eat or drink like I used to. The people I shared my "whole" story with first were my closest friends. They knew me and I trusted them. We'd been through the good and the bad together and I knew that no matter what I told them, they would listen to me, be empathetic and helpful.
But, sooner or later, I had to share some things with co-workers, neighbors, and acquaintances. This was the late ‘90s and the internet had gone mainstream, which meant health problems had gone mainstream as well. People knew more about their own health and the health problems of others. It was no longer taboo to talk about your ills and what you were doing to treat yourself. TV commercials talked about everything from erectile dysfunction to peeing on a stick to tell if you were pregnant.
If I really had to make an excuse for not being able to eat or drink something, or dashing to and from the bathroom more than the average person, I'd often play the UC card. And more often than not, the person I'd be talking to would say, "Oh, I have that..." or, "I have a friend who has that..." or, less often, "I don't have that, but I do have IBD." But, if I received just a blank stare, meaning the person had absolutely NO idea what I was talking about, I'd just say I was having an issue with my stomach that day. Just the idea of talking about the poop zone seemed to placate people and we'd move on to the next subject.
Today, if I'm talking to someone who doesn't have UC, I don't go into detail about symptoms, problems, or treatments. They're not going to get it, so why even go there. I'm not being dismissive or mean, it's true. Unless you have UC or live with someone who does, you aren't going to get what it means or how it affects a person's life. People will just think that you can take a pill, stop eating a certain food and poof, you're fine. Even though my dad has UC and my mom has IBS, the only person, other than me, who really understands what my life is like is my husband. We live together, work together, travel together and play together. He GETS it as well as anybody without UC ever will, and for that I am extremely grateful.
Now, on the odd chance that someone really pushes me for details, or insists on trying to help by giving me random suggestions, I can become quite blunt. This is rare, but sometimes it’s necessary. For example, when I was at my sickest and thinnest back in 1998--I'm 5'7" tall and weighed about 95 pounds--a "helpful" neighbor decided I was anorexic. She even told my husband so. He chuckled at the idea and told her, "No, she's not. I'm quite sure of it." Well, a couple of weeks after this, the neighbor invited me to her house for a lady's happy hour. I knew I couldn't drink, but I was still relatively new in that neighborhood and didn't want to seem standoffish. Instead of walking into a social situation, I walked into the equivalent of an intervention--for me. About seven neighbor ladies sat there telling me that they knew I was anorexic and they intended to make me own up to it, and would assist in getting me the help I needed. I listened, incredulously, and when they were done I sat there and laughed. "I don't have an eating problem," I told them, "I have a pooping problem. And it's well under control. Thank you." I got up and walked out. It was the last time I heard about anorexia or any other health issue from any of them.
My point is this: If and when it's right to talk about your health with others, you'll know it. As for how much detail to give, you'll know that too. I, however, think the less well you know someone, the fewer details you give. And when you run into people who just don't get it, or think that you're blowing your illness out of proportion (and you will run into these people—they could be friends, family members, neighbors, or co-workers), I recommend pointing them to websites where they can read about it. For some reason, when people see the symptoms and treatments and stories of other people living with UC, it makes it more real and concrete for them. Frustrating? Yes. But, it is what it is. We can't all be knowledgeable about every illness out there. So, be patient with people. And realize that not everyone will understand what you're talking about or going through. And more importantly, it doesn't matter if they do. It really only matters that you know and understand your illness and that your doctor knows and understands you and how to help you live with UC.