Ask the Advocates: Privacy In Public
Cystic fibrosis (CF) can go hand-in-hand with uncomfortable symptoms that are difficult to resolve or mask in public. For example, symptoms like bloating or bowel issues. When all you want is relief and privacy, a public setting can be stressful.
We asked our patient leaders: What are your tips for handling uncomfortable CF symptoms (such as bloating, bowel issues, etc.) in a public setting where it can be difficult to find relief and privacy - like going to a concert or the movies?
Read below their honest and insightful replies to a common situation when living with CF:
When I’m preparing for an event or large outing, I tend to lock my diet in to foods that I know how my body will respond to a few days in advance. This way I can reduce any unexpected reactions and understand the timing of when I might need to use the restrooms. I don’t get terrible discomfort from bloating when it happens, but for me that can be handled by monitoring my diet as well when I’m at the event.
Really, for my body, it all comes down to being in touch with how I react to things, and then preparing mentally and physically for what to expect.
Uncomfortable CF symptoms always seem to appear in the worst times. Dates, silent lecture halls and friend gatherings. As someone in their early 20’s, I didn’t want to look 9 months pregnant as I wore crop tops to bars on night outs. I didn’t want to leave my friends to occupy the washroom for an hour. I felt embarrassed constantly. My coping strategy is to poke fun at myself. It tends to make my friends laugh with me which removes the fear that they could laugh AT me.
Also, I realized that every single person is self conscious about something. Majority of the time people are preoccupied with worrying if their tag is hanging out of their shirt or making sure they don’t have a boogy hanging out. Or how to pick their wedgie without anyone seeing. So no, they aren’t focused on my CF symptoms in a public setting, so why should I be?
This can be incredibly uncomfortable, stressful, and embarrassing. Sometimes, being completely honest, I suffer through it if I’m too embarrassed to go to the bathroom in a public setting or at an acquaintance's house. In the past, I have made jokes out of it and tried to make it a normal part of life, but as a female this is somewhat frowned upon and isn’t as easy to do as it is for males.
My tips are basically prepare, prepare and prepare some more!
I always take my enzymes with me, lactose pills and portable medications that I’ll need as a just in case. I have a bag that I use to house my medications and my portable nebulizer and car converter outlet so I can nebulize in the car if I need to. I do not go to concerts because the risks for me are just too high and I am introverted and find myself uncomfortable in that kind of setting, I have never liked to be in a location where there are crowds. When I go to movies, I basically do not eat popcorn or any of the food because it hurts my stomach, and I don’t want to be with an upset stomach while I am out, so I avoid those foods and just drink a beverage and have my snacks that I bring with me.
I never leave the house without wearing my Spanx on because that controls my bloat and it doesn’t allow my stomach to expand so much that it causes me horrible pain and discomfort, I have found that doing this has helped me so much and allows me to enjoy myself without worrying about that bloat that I get. When I am out, I calculate everything as much as I can, I will literally not eat anything if I know already even with enzymes will cause me pain.
I know my body and I know what it can have and not have by now and I use my judgement to the best that I can and just enjoy myself wherever I go, just in a fun CF-friendly way.
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