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It's Time to Change the Conversation About Urinary Incontinence

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Hello, my name is Robert Sullivan. I am 34 years old, and I live with moderate to severe urinary incontinence, and occasional bowel incontinence. As of yet, I have not had a confirmed reason as to why I have this condition, other than my urologist telling me I have underactive neurogenic bladder, which means my bladder doesn’t always send me the signals telling me I’m full and I get the warning too late, or every now and then the nerves misfire and my bladder empties without warning.

I recently became very open about it, more open than my parents and others around me would like. It’s true that with my PDD-NOS (which is the old catch-all term which is now referred to as autism spectrum disorder in the DSM V), I may not always know what is a good time and place to bring up a particular topic, and my mom told me I should not go into detail about my bladder issues. Some people don’t like the idea of me being an incontinence advocate going around telling people I deal with incontinence. Society in general says shh! Don’t talk about it. We keep that in the bathroom. That’s private!

Well, I think that’s a bunch of crap (pun intended). Millions of individuals deal with incontinence, and they are of all ages, not just elderly people, and not just 40-somethings. I need adult diapers at age 34. I also have to cath four times a day because I also have retention. The stigma and private nature of this condition can leave a lot of people who deal with it feeling ashamed, isolated, and alone, and unwilling to see their doctor. Worse, it can make them feel ashamed, embarrassed and otherwise stigmatized about the use of absorbent products, when for many people whose incontinence cannot be cured (mine included), they are a fact of life. I now have no shame about my type of underwear. I applaud Depend’s recent campaign of underwareness, though I do think it’s somewhat misguided. It’s just pee and poop, people…we all do it. The bladder and bowel are just like any other part of your body. They can go wrong. Anyone can become incontinent regardless of age. A whole host of conditions can cause it. So we definitely need to change the conversation of incontinence from silence to “oh yeah, I deal with that too!” Folks need to feel not alone.


So you may ask, “Well, sure, we need to bring awareness, but other people are already doing this. Why do we need another article on incontinence?” Why am I doing this? Why, after several years of living with this condition and trying to hide like so many do, with society telling us we need to keep it a secret and not talk about it, am I breaking the mold and all the social rules? Why am I talking to strangers about a taboo and sensitive topic if they are willing to listen and not say “ohh TMI”? Simple: many people who deal with incontinence simply don’t know about quality products that can help manage even the most severe cases of incontinence far more effectively than certain nameless brands you might find on your local store shelf in the incontinence section. Many parents of children with disabilities struggle to find diapers that fit their children because they are too big for the biggest baby sizes but too small for the adult sizes…so where does that leave them? Many are dependent on Medicaid for their child’s supplies because they are on a tight budget, but sometimes Medicaid products are not of decent quality. I know this firsthand. Dealing with crappy diapers is the main reason I now mainly use pocket diapers.

I have decided to take matters in my own hands and found a nonprofit organization — an online diaper bank, pantry, and exchange program providing infant through adult sizes, both cloth and disposable of the highest quality to anyone who needs them regardless of Medicaid status or insurance. Quite simply, once I get established, all that will be necessary is a photo ID of the recipient and caregiver (if you are receiving diapers for a loved one you are caring for), and a letter from the recipient’s physician stating that yes indeed this individual has incontinence and is undergoing treatment for it. I used to have two separate categories: one being incontinent but otherwise not disabled and low-income, and those with incontinence and disabilities. But then I considered the cost of products, and then decided I will not consider income in regards to service. I may however ask for a very small cost share for those who can afford it and are willing to help pay for it. I also want to raise awareness and fight stigma. I am also going to start a fund for catheters for the uninsured or underinsured.

Another reason I’m breaking the mold is that I am fed up with the lack of concern over adequate bathroom facilities for those with disabilities who require the use of diapers. Imagine your son or daughter is disabled and incontinent. They need a diaper change, but the only place to change them is the floor of the bathroom. Would you want to change you infant son or daughter on the floor? I think not! But, that’s the reality of many families. I read an article on here about the public’s lack of concern over adequate facilities and I was shocked. Disability advocates have their work cut out for them. The general public is completely ignorant of the struggles families with disabilities face every day. Millions of incontinent individuals who are disabled need these facilities. It’s time for change!

So, in closing, it’s time to change the conversation, and how we view incontinence as a society. It’s the butt of jokes, but try living with it for a day and see if you are still laughing. Try coping with diaper rash and the pain it brings. And try understanding the effect it can have on self-esteem when it feels like your body betrays you. It’s not a laughing matter. But that being said, it helps for me to have a sense of humor when coping with it. But laugh with me, not at me. Please! Stop saying it’s a private matter and that only babies wear diapers. The hush-hush only makes those living with it feel worse.

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Originally published: June 29, 2017
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