When TMI is a Good Thing: MS & Bathroom Problems
Multiple sclerosis has been like a secret club at times. We have our own language and rituals. We can confab over disease-modifying drugs (DMD) or over our the latest recurrence of an old symptom. We compare neurologists in the search for the best professional that suits us. We talk about many aspects of multiple sclerosis that affect us, but we also miss some of the most important conversations. We miss understanding more about these MS issues because of a desire for privacy or a sense of shame. Bodily functions are off-limits. It's the "poop" we don't talk about.
Shame around MS-related bladder and bowel problems
There is a great deal of shame surrounding bathroom problems. Urination, defecation, menstruation. These are the "tions" we shun. Polite company does not allow for a discussion of restroom habits. Is there a polite way to ask others about how often they go to the toilet and what happens? It is too bad we don't because these topics should be discussed.
More than half of people with MS experience bladder and bowel problems
"Bowel and bladder problems affect more than 50% of people with Multiple Sclerosis (MS). These problems have a large impact on quality of life and place a significant burden on health systems."1. This means that if you are with four other people living with multiple sclerosis, it is likely that half of you suffer from problems related to going to the bathroom. It is a stigma that needs to stop right now. We all need to evacuate our bladder and bowels. Multiple sclerosis has an outsize effect on these functions that we need to survive and yet, we are often relegated to the internet to search for answers. We should be able to turn to one another in the same way we do when it comes to heat sensitivity or losing sensation in our limbs.
A frank conversation with other women with MS
I learned the importance of this from two women who are in a monthly MS lunch group. Because she created a group that was founded on fun and friendly gatherings, Stephanie set the stage for me to be able to talk. After suffering through a painful experience, I hesitantly raised the issue with my lunch mates. We were technically at a coffee klatch, but it was the same to me. I asked them if they ever suffered from severe constipation. To my surprise, they had and were happy to talk about it openly. Questions were asked and no detail was spared. It was a frank and honest conversation that helped me to understand that my doctor's recommendation was a sound one. I was relieved to know that not only was my problem common, I found women from whom I could ask questions without fear or embarrassment. Multiple sclerosis will set you free from health question inhibitions.
Hearing personal stories can help us become better informed
In asking about something that was so personal I was able to make a better decision for my health. It is one thing to do your research. There is a lot of data available regarding issues with fecal and urinary urgency. From anecdotal stories to scholarly research, there is no shortage of information that deals with the dire need to use the toilet, but it cannot fully replace the ability to ask a real person, in real-time, and with the chance to follow up. There is a lot to be said for engaging with our MS friends when we need more personal advice.
No topic is off-limits for me
A couple of years later I find myself in their role. I am the TMI (too much information) Warrior! There is no topic that is off-limits, and I let people know this. If you have to whisper it, I am here to listen. If you feel flushed asking something, I will hand you a fan and answer as best I can. When you suffer from a chronic illness, there is so much to process. With multiple sclerosis, we seem to be processing our physical health constantly. We have to stay on top of our illness the best that we can. That means paying attention to nearly every twitch, pain, or clogged gastrointestinal system. In pursuit of better health, we need to make sure that no topic is off-limits or conversation too embarrassing to have. Living our lives comfortably demands it. So go forth and become a TMI Warrior. Be that safe place for another person living with multiple sclerosis. Be that person with whom they can shoot the ... and with whom they can discuss things not meant for polite company.
Does anyone else in your family have MS?