I was born and raised in the 1950’s, and had a normal and happy life through childhood. That changed, and as a young adult urinary incontinence reared its humiliating head, the result of a growing benign spinal tumour. I was 22 years old, and newly married, and not only was I losing control of my bladder, I felt I was losing control of my day-to-day life. While surgery stopped the growth of the tumour, incontinence worsened during the early years. Managing incontinence was certainly a challenge, as products and devices were limited and not nearly as developed as they are today.
Aside from the obvious physical effects of losing bladder control, the emotional effects in trying to manage incontinence were devastating for me. I felt a failure, and struggled to achieve basic life coping abilities. I struggled through my college years, and later through employment. I feared being found out by my peers, and discouraged promising promotions at work. My talents were being wasted because of my inability to cope with my bladder leakage. Eventually, I welcomed a reclusive lifestyle finding comfort alone in “my closet.” A divorce, and the loss of employment opportunities, made me feel I was very much alone, or so I thought.
I realized that there must be others like me, and wondered how they coped. I did some research in libraries and little by little was educated on how my own plumbing was supposed to work, and why it failed at times, and I learned newer coping skills to deal with accidents. However, in my eyes, my emotional well-being was still in the gutter.
In early 1980’s I met my second wife, who was more understanding that I ever thought possible. With encouragement and a big push from her, I found the Simon Foundation. Together, my wife and I traveled to Chicago (where the Foundation is headquartered) from Windsor, Canada, so that I could attend my first self-help group meeting. I recall the fear I had prior to the meeting, wondering all kinds of things that could cause embarrassment, and possibly drive me further back emotionally. When I entered the meeting room, I immediately
felt comfort seeing other’s in my situational position. I was amazed how I opened up, pouring out years of emotional frustration. The meeting lasted a couple of hours, and when I left to re-join my wife, I felt that my life had taken a positive turn, and I kept her up the entire night talking! I participated in more self-help meetings, met more people just like me, and even started meetings in Canada to help others.
Today, I manage my incontinence very effectively. I’m still with my spouse, my children are grown, and my grandkids are very much in my life. I enjoyed a prosperous career with a government legal agency representing workers with their compensation claims. I retired a few years ago, but re-deployed in a mentoring capacity.
Essentially, this could only have been possible by coming out of my closet, and talking about my own incontinence. I thought incontinence was a taboo subject not to be discussed amongst friends and peers, and felt stigmatized when it was brought up. For me, it is now no longer a stigma, and I can talk to anyone about it.
When I look back on it, I probably had this problem even in high school. I recall having to go to the bathroom more often than my friends, and I remember being embarrassed to ask my date to stop somewhere AGAIN so I could use a bathroom AGAIN! I hated to ask, and therein lies the problem! Why are we so embarrassed by a function everyone has to do?
However, incontinence didn’t worsen to the point of maddening until I was in my 40s, although I always had a “frequency” and “lack of resistance to the urge” problem. My husband and I would be out shopping in a store and I’d have an overwhelming urge to pee, and I’d have to squat down or kneel and pretend to be examining the merchandise on the lower shelf until the urge passed, unless I could find a place to sit down. I have no idea why it didn’t occur to me to use pads to keep from leaking on my clothing, except that it really wasn’t something that was advertised on TV or in print ads way back then. So I muddled along trying to cope with the urges, which in my case sometimes would happen multiple times an hour. If only there was always a chair to sit down on whenever it happened.
My husband finally caught on to what I was doing (of course I couldn’t tell him!), and then it made him irritated to see me dancing around in a register line, or pretending to examine a bottom shelf. To this day, he points out bathrooms to me so I’ll know where they are just in case. However back then, he was upset and embarrassed that I would have “an episode” and not be able to hold it. People that don’t have it cannot imagine what it’s really like.
Honestly, there was really nothing I could do about it. Eventually, we were able to calmly discuss it and he understood how bad it was…I just had to be brave enough to admit it. And this was MY HUSBAND! Why do we have such an aversion to matters of the toilet, and why do we put ourselves through the misery of keeping it to ourselves?
I had been volunteering for the Simon Foundation since 1992. One time, I had to go to Montana for a speech and program. I gave one presentation right off the plane, and the next one was early the next morning. I believe I had 2 cups of coffee, some grapefruit juice, and another bladder irritant of some kind, and then stepped to the podium. Of course, it wasn’t long before I had to go. Now, mind you, I was standing there telling these folks that they shouldn’t be embarrassed to admit they had to go rather often, and that there was absolutely no reason not to stop in the middle of anything to say “Excuse me, I have to go…. right now!”, so why was I standing there dribbling down my nylons into my heels? Obviously, I didn’t think I could stop in the middle of that speech, when it would have been a perfect example.
Having participated in the sport of curling for most of my life, I was excited to go to the Olympics in Italy in 2006. The venues were at least 40 kilometers (approximately 25 miles) into Torino or even further up the mountain for the ski events. Bathrooms were not readily available.I leaked into so many pairs of pants that I finally had to stay home from events one day so I could wash some things. Although I was with one of my best friends on this trip, she also had invited two of her work friends, including a man, so I didn’t really admit to them what my issue was. They may have guessed from my odd behavior, but otherwise must have been mystified. Again, there was undoubtedly help to be had for me, but I didn’t look for it, nor did I admit it to people who likely would have understood.
I went to the next Olympics in Vancouver in 2010. Our housing was all the way across town from the curling venue where we spent much of our time. We had breakfast, got a cab to take us to the bus station, and the bus to the train station, then changed trains in downtown Vancouver, and eventually had to walk another half mile to the facility, then wait in Security lines. The bathrooms were port-a-potties. It was pure misery every day, going back and forth….did I mention that the train and bus stations had no bathrooms? By then, I had explained to my friend what my issues were with the overactive bladder, so at least she tried to help in any way she could. We did have to get out of the station in downtown, and go find a bathroom, before we took the last train ride and walk. Again, why didn’t I want to admit to my best friend what was wrong, and why didn’t I seek help?
Along the way, one female GP I finally mentioned it to gave me a prescription, but even after a few months, it didn’t seem to help. A gynecologist suggested I take Premarin, but again, it didn’t help. I also worried whether it was appropriate at my age. Informing my friends, being honest about the disease, and finding absorbents finally have made the difference in my life to make urge incontinence manageable. Now the problem is only what size problem should I plan for?
I inform all my doctors now and make sure my friends understand that if I have to use the bathroom, I’m not kidding, nor do I have much wait time. If we are walking around, if I say I need to sit down, they know why and help find something. Openness is the only way, but it is so hard to achieve, and I couldn’t believe it could be so hard to just accomplish that. I blame our overall toilet shaming from an early age for much of our reticence, and society’s attitude and stigma problems. However, I do wonder why I was so reluctant to seek help, when I knew there would possibly be something I could do. After all, I do work for an organization whose mission is helping people with incontinence. It didn’t help that only the female GP, and none of the other doctors, asked about incontinence.
If we can just start removing the stigma, and keep finding new ways to manage or cure incontinence. It will be a great day when it’s finally defeated! I do find ads on TV, in magazines, etc. to be helpful with bringing the issues into the open and into the consciousness of the public. But, how do we get folks to realize there is help to be had, and no one is executed for asking for it?
In 2009, at the age of 48, I had a disc rupture at the base of my neck causing me to be paralyzed from the chest down. I was fortunate to be in the hospital for testing at the time and underwent emergency surgery to remove the ruptured disc and perform disc fusion surgery. I spent 14 weeks in inpatient rehab followed by 16 weeks of outpatient rehab. I slowly regained the ability to walk over the course of almost a year.
The outward signs of a spinal cord injury (SCI) are fairly obvious– wheel chairs, walkers, canes. People not familiar with SCI do not realize all the internal issues that accompany the injury; bowel and bladder issues, sexual dysfunction, nerve pain, muscle spasms, etc… One of the internal issues I still deal with daily is urinary incontinence. I am fortunate to be able to void voluntarily for a majority of the time. I need to monitor my intake of liquid, not drink too much at one time, and stop drinking liquids about 4 hours before bed. I also must be aware of how far I am driving or walking so I feel comfortable that a restroom will be nearby when needed.
I use a catheter to void before bedtime, driving long distances, or going for long walks. When the urge to void strikes, it is hard for me to control it. I have had plenty of close calls and a few accidents over the years. I have had to pull my car over while traveling with family, friends, and on a couple occasions new coworkers. I have had to duck behind trees while walking in the neighborhood. On too many occasions I have needed to excuse myself abruptly in the middle of a conversation to find the nearest rest room.
It was fairly easy to tell people who know me about my incontinence. They are aware of the injury I have and most asked a lot of questions about how I was recovering. The fact that I was rushing off to find a bathroom at a moment’s notice was an easy lead in to a discussion about bladder issues. I do not look to disclose to people unless they are genuinely curious as to the effects of my SCI or a situation arises where I feel it is probably a good idea to explain the panicked look on my face and the sudden movement that follows.
A few years ago, I was driving my boss (Pete) to a sales meeting in downstate Illinois. I had drank too much water that morning and the urge to void crept up on me quickly. To my relief, I soon saw a sign for a rest stop in 3 or 4 miles. As the urge increased, my foot pressed harder down on the gas pedal. As we reached speeds of 90 MPH, I noticed Pete looking at me with concern. I told him that I really needed to empty my bladder and apologized if I was making him nervous. He told me not to worry, he was ok.
We rounded a curve before the rest area only to find it was closed due to construction. I pulled off the side of the road and ran into the woods to relieve myself. When I got back in the car, Pete didn’t say anything but I felt like I owed him an explanation. He knew that I had a spinal cord injury so I was able to explain that my SCI effected my bladder to the point where I did not always have control. He was very understanding and I think he gained a little more respect for the challenges I face on a daily basis.
It does not bother me to disclose that I have urinary incontinence. I do not usually use that terminology though. I tell people I have bladder issues. If they understand incontinence and use that term, then I talk in those terms as well.
Because the effects of my SCI are not very noticeable, I do not feel that people think of
me differently because of my bladder issues. I am also the type of person that really doesn’t care if they do. In the end, we all have our challenges that we need to overcome. Making adjustments to my daily habits due to my incontinence has just become part of my routine. It is a small part of who I am but definitely does not define me.