In her own words: living with urinary incontinence
Urinary incontinence can have any number of causes. For Kay, a 51-year-old mother of two, incontinence is secondary to her mild multiple sclerosis (MS). Here, she discusses the condition that no one wants to talk about.
What was your first sign that something was wrong? What symptoms did you experience?
Oh, you sort of know this symptom for what it is the first time you experience it! I've known about the MS for several years, of course, and I had known that urinary incontinence could be a side effect. I experience incontinence, so far anyway, only in the daytime, when I'm vertical—gravity plays a role here. I have anticipatory incontinence, so I'm never sure whether I'm going to make it to the bathroom, but I also have some stress incontinence—when I laugh hard or sneeze, for instance.
What was the diagnosis experience like?
With respect to the incontinence itself, there wasn't really any separate diagnostic phase. In educating myself about my MS, I had learned that this was a likely outcome.
What was your initial and then longer-term reaction to the diagnosis?
Oh, it's just humiliating! It really feels demeaning. It’s hard sometimes to maintain a positive self-image when you're perpetually—to put it delicately—moist. I'd like to say that I take it in stride now that a few years have passed, but that wouldn't really be true. It’s still a nuisance and I still hate it and the way it makes me feel.
How do you manage urinary incontinence?
By wearing pads or adult diapers. What else can you do? It’s like having a perpetually runny nose—you can't not address it. There are medications for this condition and I've tried two of them. One was simply not effective at all in controlling my incontinence. The other kept me dry but had a psychotropic effect—it made me so cranky that I just about lost all my friends. It was a trade-off, and I chose to go off the medication and be able to be nice to the people I care about.
I'm lucky in some ways, though; MS can also cause people to lose the capacity to sense when their bladder is full, or to be unable to release urine. In that case, you could have to self-catheterize a few times a day. I haven't had to do that yet—and I'm not looking forward to it!
Did you have to make any lifestyle or dietary changes in response to urinary incontinence?
Oh, yes, it really affects much of what I do. For starters, I know where every bathroom is in my town and the surrounding towns I visit. I know which restaurants or shops don't have bathrooms at all, and I simply can't patronize those places any more. It also makes traveling a little tricky, but I manage to find a way, since I love to travel. And you sort of lower your standards; I have a dear friend who is incredibly fastidious about which public facilities she will and will not use—she’d just die if she could see some of the grungy places I've had to put up with!
Did you seek any type of emotional support?
My family knows, but, outside of talking with my doctor about it, I have never spoken about it with anyone else until now. It’s just something I'm not comfortable talking about—it’s too embarrassing.
Does having urinary incontinence have an impact on your family?
My husband is great—he just takes it in stride—and my two teenage kids are always rolling their eyes and sighing as I run off to the bathroom: “There goes Mom again !” I'm trying for a humorous approach, but I'm not quite there yet. But I try not to let it affect what we can and can't do as a family.
What advice would you give to anyone living with urinary incontinence?
That's a hard one. I think, because it's such a difficult thing to talk about, that it's important to know you're not alone, that there are lots of others of us out here. And you can feel so awful about yourself sometimes—just try not to let it define you.