Jeff Albaugh, PhD, APRN, CUCNS
I am an advanced practice urology clinical nurse specialist and researcher. Every day I have the honor and privilege of treating patients with urology issues (including incontinence) in my practice. It is not easy to come talk/disclose to a healthcare provider about very personal issues like sexual dysfunction and incontinence. My patients are very brave and teach me so much about how to navigate the challenges of life. Having experienced my own health challenges in the past, I know how difficult disclosure can be for each of us. Although I am already overcommitted with my two clinics and the many other activities, I felt this project was very important because all of us must carefully choose who has earned the right to share in our story and our journey. I hope the information provided will help each person to live their own best wholehearted life.
I was 22 years old when incontinence became part of my life. At the time, I didn’t know why, and I didn’t care why, because I was too embarrassed. I had little control, and little control of my personal and professional life. I gave up on promising promotions, and became housebound. My unpredictable bladder kept me close to home. For many years, I was so alone, and worried all the time about being wet and friends finding out my secret. I want to show and support people that are living with incontinence, and to avoid those negative experiences that I had for many years.
When I first started having bladder problems, due to a traumatic gunshot wound at the age of 15, I remember the embarrassment, shame, and walling myself off from friends and society to keep people from knowing I peed on myself. I had never heard of the word “incontinence” nor knew what it meant. All I understood was I peed on myself. I would do things like pour liquids on myself to make people think I spilled something in my lap. This was a very lonely time for me and an experience I don’t want anyone else to have to go through.
I have a sad memory of how long it took me to be able to open up to my family and friends about my urge incontinence. It’s hard thinking back to how difficult it was to enjoy even simple outings (shopping or short outings), and indeed big trips (like to the Olympics in a foreign country), when I constantly worried about whether there would be a bathroom nearby when I needed one, with no warning. Before I found pads, leaving the house was a nightmare. I want everyone to be able to enjoy removing the weight of secrecy and fear from your life. This program should help a lot of 6 people, and I am proud to have helped develop it. Choosing who to tell, and being able to say, “Excuse me, I need to stop at or find a bathroom,” without explanation, is priceless. It’s easier every time, I promise. Our options are better now for management and treatment, too. You’ll be happier if you learn to be more open, because so much apprehension goes away.
I have had the privilege of consulting with the Simon Foundation for Continence on many projects since 2012. As a certified and credentialed Life Coach, I work with individuals and groups to improve the quality of their lives, achieve goals, and reach their fullest potential. I created the first Continence Coaching Program for the Foundation and I currently respond to all 800-line callers . I have seen first-hand how the stigma of incontinence affects the lives of so many individuals isolating them from their family, friends, and the life they want to live. I believe this toolkit will empower individuals to ask for what they need from family members, friends, work colleagues, and medical professionals in order to improve the quality of their lives as they manage their incontinence.
After my Spinal Cord Injury, one of the issues I needed to learn to live with was urge incontinence. Since I was dealing with learning to walk again, muscle spasms, and nerve pain, incontinence was one more thing I needed to adjust to. People seemed to be more understanding or empathetic to seeing me in a wheel chair or using a walker. Incontinence is a different story. Because incontinence can be so embarrassing, I feel it is important for people to know they are not alone. Having to stop people during a conversation in mid-sentence to find a bathroom or having to pull the car over to the side of the road suddenly makes people question your health (and maybe your sanity). I recall a recently injured younger woman at a peer support meeting years ago, whose main focus was on incontinence. The fear of having an accident in public kept her from leaving her home. She was desperate for advice on how to deal with her incontinence. The ‘veterans’ of the group had some very practical advice that I could tell made her feel better. The fact that they were comfortable sharing and had overcome their fears of having an accident in public seemed to give her some hope. My hope is that this program gives people the confidence to explain their condition and their subsequent needs. Being open to the right people can then lead to support and understanding and eventually a better quality of life.
Lindsay Sheehan, PhD
I am a Senior Research Associate at Illinois Institute of Technology and my work focuses on health-related stigma, disclosure of stigmatized conditions and services for people with mental illness. In community-based participatory research (CBPR) researchers collaborate with community members on projects that are important to them. As a proponent of CBPR, I was excited to partner on this project. I hope this toolkit can touch many peoples’ lives.