The hidden side of incontinence: Mental health challenges

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Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us today is Sarah Jenkins, the executive director for the National Association for Continence. Welcome Sarah.

Sarah Jenkins: Thanks, Bruce. I’m so happy to be here.

Bruce Kassover: Me too, because today our guest is Tina Harris. She’s the Vice President of Clinical Affairs for Tenderheart Health Outcomes, where she leads clinical monitoring and provides oversight to patient engagement teams. She focuses on things like optimizing clinical workflows and ensuring high quality coordinated care. She’s a friend of the podcast because we’ve had the the pleasure of speaking with Tina a few times about different subjects. And today we’re going to be speaking about one of the most important things of all when it comes to people living with incontinence and one of the things that we should probably be talking about a lot more frequently also, and that’s mental health and the mental health component of living with and dealing with incontinence. So, welcome Tina. Thank you for joining us.

Tina Harris: Yes, glad to be here, Bruce. Thank you so much.

Bruce Kassover: Now before we even get going, maybe you just want to refresh everybody real quickly on who you are and your perspective on the incontinence community.

Tina Harris: Sure. Absolutely. So I’m very honored to be, talking about mental health this month. At Tenderheart Health Outcomes, we are a value-based incontinence provider. So what we do is we partner with health plans to ensure that people who are living with incontinence have their needs met and that they can live longer in their homes. So we provide incontinence products, absorbency products wearables, pull-ups, briefs, bladder control pads, you name it. And we make sure that patients are receiving high quality products along with we have incontinence coaches and specialists who are able to provide resources to the member to help them to manage better at home.

Bruce Kassover: You know, that’s really nice addition because, you know, a lot of science, an enormous amount of science goes into creating effective products for people with incontinence.

But in some ways that may actually be the easiest part of things because the mental health challenges, the emotional issues that go along with incontinence may be much more difficult in some ways to address, and I understand that you and the folks at Tenderheart have recently done a survey that sort of really illustrates that. Maybe you could tell us a little bit about that.

Tina Harris: Yeah, absolutely. So we’ve actually done two different research tools. One is we recently completed a research project with the University of Minnesota and the University of Pennsylvania to study counseling sessions on folks who are living with incontinence.

So out of that particular project we were able to determine that there were some significant impacts to mental health as it relates to folks who are living with incontinence. So the quality of life, for those that are living with incontinence, they rate themselves much lower on their level of incontinence, which means they have a disadvantage in the quality of life than other folks who are managing chronic conditions or don’t have any chronic conditions.

There’s also a higher impact on depression as it comes for people who are dealing with incontinence. So those were a few things that we found out from the study. But the other part of that is that there’s also some hope there, because 65% of the people from that study felt that their overall wellbeing could improve with proper support.

So that’s exciting to hear the good side of that. And then we also regularly, Tenderheart performs patient satisfaction surveys. And so from those surveys, we were able to determine that more than half of people living with incontinence have worries related to the condition. It could be that they will have a leak, right?

We’re we’re at on a podcast, Life Without Leaks, right? So leaking the embarrassment of that there’s a worry around whether or not they have the correct products or the right treatment for their incontinence. Talking about the incontinence also causes people to to have some level of, of depression or sadness.

And then second, the stigma of not being able to talk to people about incontinence also increases that risk. Women are more susceptible to depression because incontinence occurs more so in women versus men. And also versus, to be honest, women have a lot more stuff to deal with. We’ve got pregnancy, we’ve got menopause, we’ve got pelvic floor dysfunction, so we’ve got a lot of other stuff that lends itself to potentially being depressed. So those were some of the things that we found out in doing not only the research study, but also some of our patient-reported satisfaction surveys.

Bruce Kassover: When it comes to the numbers behind mental health, the surveying that NAFC has done, it actually reveals some, some really interesting insights as well. Sarah, maybe you wanna talk a little bit about some of what we’ve found?

Sarah Jenkins: Yeah, I’d love to Bruce. You know, NAFC conducts a patient survey every year, and we’ve heard some of these stats before, but this year we, we focused on mental health and it was really. Kind of mind blowing how much of an impact incontinence has on a person’s mental health. 90% of patients we talked to said that incontinence affects their mental health. 85% said that they have to, at least at some point, plan around a potential leakage by, you know, scouting out a bathroom or bringing an extra bag along. 68% said it impacted their work life. 88% reported that incontinence impacts their confidence. 67% said that it affects the time with their family, kids, or grandkids, and social functions. It just, it touches every part of our lives and, you know, we really want patients to know that they don’t have to live like that. There are treatments available and so grateful for Tenderheart with all that you do to help patients.

Bruce Kassover: Those are some pretty remarkable numbers. I mean, it’s amazing just how deeply it affects people. One thing stood out to me Tina is that you mentioned how talking about incontinence can actually be something that is bothersome to people and be depressing or anxiety inducing and not talking about incontinence can also be something that is depressing and anxiety inducing. It almost sounds like a “damned if you do, damned if you don’t” sort of situation.

Tina Harris: Yeah, absolutely. There’s a lot of social isolation that happens. People living with incontinence don’t often talk to the people around them, including their providers, Bruce, about what’s going on. I think you all did a survey recently, about incontinence as well that reflected that.

A lot of people dealing with incontinence, they don’t talk about it until. Six years after they’ve had their first symptom. So that tells you how isolating that is and how a stigma it is to even talk about it. And so just like with anything, if you’re not able to express what it is that you’re saying or you think there’s embarrassment around it, that’s going to cause you to be isolated.

Sarah Jenkins: Yeah, we hear that all the time, Tina. You know, people are so nervous to talk about it and bring it up and they just live with these symptoms until it gets to the point where it is just completely overhauled their life.

I mean, we just did a survey around mental health as well, and found that 90% of the patients taking the survey said that incontinence somehow affected their mental health, whether that’s through, an impact on their work life, their confidence, their relationships and intimacy, their time with their family.

I mean, it really touches every part of your life. And I think a lot of people don’t realize that, you know, you think about incontinence as just being bladder leaks, but it impacts your ability to kind of do the things that you love and, you know, the longer that you wait to talk about it the longer that is going to just be prolonged.

And it’s a very isolating condition. I mean, you know, we created our NAFC message boards partly because of that, because people just need a place to go and share with others who know what they’re going through and who are experiencing the same things. So, you know, we totally hear that all the time and it’s heartbreaking to know that these patients are struggling, especially when they don’t really, they don’t have to.

Tina Harris: Absolutely.

Bruce Kassover: So, Tina, when we’re talking about mental health, you know, the words, the phrase ‘mental health’ itself is a really big one. And it covers, you know, an enormous range of emotional issues. And I know you’ve, you’ve touched on a couple, but maybe you could talk a little bit more in detail about what sort of variety of mental health challenges in particular people tend to face.

So most of what we see with those living with incontinence is depression and anxiety. Those are the top two that we see most often. So, they lose interest in doing things. One is because they’re afraid to go outside without the embarrassment of leaking somewhere. They don’t have the appropriate product, so they can’t go away on a vacation or, or take a two or three day trip because they’re embarrassed.

And so there’s a lot of loss of interest that happens with not being able to get outside and interact the way that the rest of the world does. There’s also thoughts of having fatigue a lot when it comes to having incontinence, right? Because when you’re depressed about not being able to talk about it, not being able to go out and see your friends, go to your grandkids, you know, graduation or what have you.

That creates a lot of sadness. You’re not able to interact with folks. You also have substance misuse sometimes that goes along with depression and incontinence. Meaning not necessarily that they are using illicit drugs, but they may be not using their drugs correctly, like overusing them or underusing them in some cases.

So we do see a lot of depression connected to social isolation, embarrassment. You know, not being able to talk about the condition. And then the other one is anxiety. I touched a little bit on this in our, our study project, just that excessive worriness, right? I think, you know, Bruce, we all could understand whether we are challenged with incontinence or not, that to go outside and have an accident.

It could be embarrassing, right? You know, kids have incontinence to a certain age, but after that it becomes just really a stigma, right? That you’re afraid to go out. So, you know, the excessive worry or, you know, will someone notice if you’re using an absorbency product, will someone notice that I am using a product, right?

And not being able to get to the bathroom fast enough, right? Not getting the supply. So with Tenderheart, we ship supplies to patients and they get them at the same time every month. And one of the reasons that we do that is because we don’t want patients to have to worry about their, when they’re going to get their products.

And so they can expect, “I’m going to have enough product or absorbency products to get me through the month.” But imagine folks who have to go to the retail shops, right? And they have to buy their own incontinence supplies. They may run out, they’re not sure how much they’re supposed to use. So there’s some anxiety around that.

And again, having the discussion or not having the discussion also can lead to some level of worry about what people are going to think if I bring this subject up. “I don’t wanna tell my daughter or my son or my spouse that I’m suffering, you know, with incontinence.” So there’s a lot of anxiety and depression and they typically go hand in hand.

I know that treating mental health challenges can be very difficult for a lot of people, and I’m wondering if you could talk a little bit about some of the strategies, some of the approaches that people might take if they find that their incontinence is causing issues, you know, emotional issues for them. What sort of, approaches make sense for people generally?

Tina Harris: So the first thing that I would say, so I’m, I’m a clinician Bruce, but, I would encourage them first to talk to your doctor because there are multiple treatments that are available for incontinence. Absorbency products is not appropriate for every single person, right.

There are different modalities of therapy to treat your incontinence up to and including surgery, right? Or physical therapy. So I would say talk to your doctor first about how you’re managing your incontinence to make sure that you have a plan for what’s best on your particular condition.

The other thing is just to promote more awareness and education about the conversation. So that’s kind of what we’re doing here, Bruce and Sarah, is to create a conversation where we are, normalizing talking about incontinence. So I would encourage that person to speak out about their incontinence to their healthcare provider, or to their son, or to their daughter or whoever that they feel comfortable with so that they can release some of that anxiety that comes along from holding in sort of, I hate to say the word ‘secret,’ but kind of holding this secret close to the vest. Be open to talk to, if not your family members or friends or your spouse, talk to a therapist as well if you, you are experiencing, you know, depression and anxiety, or even if you’re in a critical situation where there are suicidal thoughts, you wanna make sure that you reach out to the appropriate mental health professionals.

Also call 911 if you’re in, you know, a critical state just to make sure that you are being managed correctly . The other thing is just to make sure that you are accessing some of the national and local resources. There are tons of organizations, which I know you guys will share some of that in this podcast. But there are the National Mental Health Hotline. There are tons of people that you can call on the phone and talk to about, you know, your incontinence and what you’re struggling with. For those who are using absorbency products, you know, again, get with, a provider or someone who specializes in that. Tenderheart, we’re happy and, and honored to help anyone who calls us and needs some advice on how to manage their incontinence.

And then the other thing that you could do it is just some mindfulness techniques and relaxation. So a lot of times, and I even do this, Bruce, when I’m feeling anxious, I’ll step away and I’ll take kind of some deep breaths, right?

So slow, deep breaths, in and out, through the nose or the mouth. Whichever’s more comfortable for you. And that gives you just a feeling of resetting and releasing some of that anxiety that you may be carrying.

Another thing is to acknowledge the feelings that you have. So that kind of goes along with what I spoke about previously, about talking more about your feelings, talking more about your worries or your anxiety surrounding your condition. But being able to put feelings to that is also helpful to manage with depression and anxiety. So, acknowledging the feelings, saying it out loud, “I feel nervous because I’m worried about going out and leaking in public.” Right? Just saying that helps you, you know, acknowledge the situation, but also release the burden of not having spoken you know, publicly about, how you’re feeling.

Bruce Kassover: I like that. And I hope that people take what you’re saying to heart because it can make, you know, it can be literally a life changing difference for them, but we’ve been talking a lot about the patients and how patients can address the mental health challenges they’re facing. Maybe you could talk a little bit about what it’s like for caregivers as well, when they’re dealing with a loved one who is going through these sorts of problems.

Tina Harris: Yeah. So the first thing I would say is to be supportive and to listen to your family member. You know, sometimes you can go into homes and, see absorbency products, there are probably bladder control pads there that they may or may not think is used for something else. But just being aware of the care surrounding that patient. So be open to hearing their concerns, open to allowing them to share their feelings. And then also there are national organizations like the National Family Caregiver Support Program that caregivers can actually reach out to if they need additional counseling, just themselves, because sometimes it’s overwhelming to be a caregiver, and, you know, having to toilet someone or help someone who has a disability. It can be very burdensome on caregivers. And so there is a way for them to get support as well. So using those national organizations.

Also, there’s a SAMSA, which is the Substance Abuse and Mental Health Services Administration. They’re also a great resource that provides caregivers specific and condition-specific resources and crisis, training as well. And so the caregiver, just knowing that there are other resources, but also just being a listening ear for that family member, also trying to desensitize the conversation with them, right? Not judging them, not, you know, simplifying the condition, but just acknowledging, you know, ” I understand your situation and it must be frustrating for you to have to deal with this day in and day out. How can I help? Right? How can I help?” If you go to the provider with your loved one, just again, asking the provider, you know, what treatment options do we have, you know, make sure that we do appropriate screenings for mental health is important as well. And that’s something that. Even caregivers can pick up on if someone is, you know, not interested in something or they’re kind of withdrawing, that would be an indication to ask, you know, “Are you okay? How are you feeling?” And help the, the patient to get the support that they need.

Bruce Kassover: I love that you mentioned a couple of these organizations and there are a, a whole bunch of mental health focused organizations for patients and for caregivers. And in the show notes, we’re going to make sure to put the contact information for these so that anybody who feels like they can benefit can, can reach out directly and find the help they need. And that’s not only for people, of course, who are feeling extreme mental health pressure, you know, people who are suicidal or who are just, just very deep in a depression. It’s for people who are at almost any stage. If they recognize the fact that, “You know what? I can benefit from it, I should reach out.” So maybe you wanna talk a little bit about that. Also, not the organizations themselves, but the stigma about mental health, not just about incontinence, that sometimes keeps people from getting the support that they need.

Tina Harris: Yes, absolutely. And I know we’re focusing specifically on incontinence, but of course this can be applied to any population, any people, right? We all have mental and we all have health. So we all have mental health is what I say, and so, it is important for the community to realize that we all struggle from time to time, right?

And also, just because someone is sad doesn’t mean that they have depression per se. Depression is a clinical diagnosis just along with anxiety as well, and the type of anxiety and the type of depression. So just being sad in the moment or just being anxious in the moment, that’s normal. That’s, that’s a normal mental health.

However, when it becomes to where you’re experiencing the symptoms for longer than two weeks or so, then that’s when it’s important to seek help. But to your point, Bruce, you don’t have to seek help when you’re at the end of your rope. When you see that rope forming, go ahead and try to reach out. Reach out to, again, someone that you trust, a family member, a neighbor, your spouse, your provider, and, and allow them to support you and provide some resources to you. And each of us can do that, whether or not we feel like we’re in a crisis mode. So mental health is important for every single person, no matter what stage of life or what condition you’re in.

Bruce Kassover: I could not echo that more strongly enough, and I really appreciate hearing you saying that Now, Tenderheart has done these studies and just understanding the landscape of mental health is important, but I’m wondering, does Tenderheart have any particular plans for the use of these studies? Or how, how is Tenderheart going to make use of the information that, that you’ve discovered?

Tina Harris: Yeah, so part of doing the research was for us to find, more ways to support the community. So being able to provide resources to people and to create service programs. Right now we are working on providing a caregiver support resource along with the patient as well on our website. And so, folks can access that to get additional information about managing incontinence and we’re, we’re covering all types of topics on our website. So that was one, one way that we were able to use some of the information that we found out for the study.

The other thing is to create an avenue where we’re looking at the patient holistically, right? So this is bigger than just incontinence. Mental health is bigger than just incontinence. So, you know, whether or not folks have things that they need in their home, right? Do they have actual support? So we embed some of that, those types of questions to identify patients that have an immediate need so that we can provide a resource for them.

Bruce Kassover: Since we’re talking about Tenderheart, you, I know you touched on it a little bit earlier, but a little bit about what Tenderheart offers. Maybe you could tell us where they can find Tenderheart Online and when they go there, what they could find that might be of value to them.

Tina Harris: Yeah, absolutely. So you can access our website through www.tenderheart.com, and when you go to that website, you’ll see a lot about our company, about us and all those things and the services that we offer, but there is this section called value-based incontinence.

When you go under that section, you’ll see some resources about caring for incontinence. Now we are building that section of our website out, but at the bottom of that there is some resources and organizations that are also working towards the same mission as Tenderheart and NAFC to provide better support for folks with incontinence.

And so that’s where I would direct them to go if they’re looking for a starting point on finding resources. If they’re looking specifically to talk to us, there is a contact us on that webpage, so you can contact us there, or you can also contact us by phone. It’s a toll free number. (877) 394-1860, and we’re happy to answer any questions that the public has related to incontinence or, you know, treatments, absorbency products, those types of things. We’re happy to help.

Bruce Kassover: And what sort of products do you guys carry?

Tina Harris: So we carry absorbency products, things such as I mentioned, I think some of them earlier. Bladder control pads, pull-ups, adult briefs, booster pads. We actually offer your urology, if needed, like catheters and different things like that, under pads, wipe barrier creams, anything that you can think of, Bruce, we offer. We are a brand agnostic as well, and so we can we offer any manufacturer. If you can name it, we can probably get it. But one thing for certain is that the products that we provide, we vetted those products to make sure that they are quality products that work for the patient.

Bruce Kassover: That is excellent. So tell me though, why would I wanna go to Tenderheart instead of just, you know, if I know a product and I find it on, you know, I could find it at the local, you know, drugstore or something. What, what is the value add behind Tenderheart that really makes you a good choice?

Tina Harris: Well, outside of just providing just high quality superior products, we also have a support staff. So I mentioned we have incontinence coaches, so you can literally call them and we can help, again, provide the resources, help provide some additional aspects to how they can manage their incontinence at home. Sometimes that’s not provided, not even in the provider space, like physician offices or things like that. However, Tenderheart focuses specifically on the patient experience. We want to empower patients to be able to live independently at home and confidently. So that’s one of the things.

The other thing is that, the stigma that we talked about of not talking about incontinence. All of our staff, and I say this with 100% confidence, all of our staff are compassionate and trained to talk to the public about their incontinence. So we are listening, we are understanding that each individual patient, their experience is different. So even though there’s, you know, millions of people that are challenged with incontinence. Every one of them is experiencing incontinence just a little bit different. So we give individualized care and we break that stigma of, “No, we should not talk about incontinence.”

We will talk about whatever it is you want to talk about.

Bruce Kassover: That’s great. And then, you know what, I’m sure that there are enormous number of people out there who, you know, they don’t just need to pick out a product, but they need guidance to help pick, pick the right product and have somebody who really understands what they’re going through to help them really feel reassured.

Plus, I think that automated, you know, reordering process that you were talking about has got to be really nice to make sure that, that you, you never run out, especially when you need things the most.

Tina Harris: Yes. And I appreciate you mentioning that. because I meant to mention that as we were going along. So the other thing is not having to worry about there, I mean, there are tons of absorbency products on shelves, right? It’s retail stores, they’re in, you know, supermarkets everywhere. And so there is a lot to go through when you’re trying to figure out what’s the right product that’s going to meet my need.

So that is a difference, is that we take that burden off of the member by understanding, again, their condition more and making a recommendation about, you know, how the product would best fit them. So we can, we can help with trying to decide what products are best for you.

So, I also want to mention Bruce, that while there are people who pay out of pocket, absorbency products, if they’re appropriate, are covered by Medicaid under most plans in most states. I’m gander to say it’s all of the states, I believe, but I won’t say that with 100% certainty, so I’ll say the majority of the states cover some level of incontinence supplies. So just want to make sure that, you know, if there are folks who are listening to the podcast who have some form of Medicaid program or insurance, that there could be some coverage for those products so that you do not have to buy them out of pocket. So I would encourage them to follow up with their particular plan and ask those questions about what their benefits offer.

Bruce Kassover: That is great to hear it. I’m sure that there are a lot of people who, who will be very happy to find that their, their products could be covered. That’s, that would be awesome. Now, as you know though, as a friend of the podcast, this is Life Without Leaks, and one of the things we always like to ask our guests before we’re done is to share a little hint, tip, strategy, bit of advice to help them live a life without leaks. So I’m wondering if you might have one that you could share with us today.

Tina Harris: You know, I think Bruce, because we’re talking about mental health, I think it’s important for the community to know that if you are living with incontinence, that you are not alone. Again, there are millions of Americans who are also in this similar situation, and so be bold to talk about that. The more we talk about it. The more it will be a normalized conversation, even with the providers, with your family members, with your friends. Now you don’t have to, you know, talk about it around the table or anything, but don’t be afraid to let someone know that you need assistance with your with your condition. That is the best way to get the message out, and it’s also the best way to get support that you need. And also help you to feel healthier and live a confident life.

Bruce Kassover: That is an outstanding recommendation. I hope that people follow up with what you’re saying. And I just want to say that we really appreciate you sharing, sharing this insight with us today and the entire team at Tenderheart for taking a task like this on and really trying to help improve the lives of people with incontinence, not just from a practical, physical perspective, but from a mental health perspective as well. So thank you.

Tina Harris: Yeah, absolutely. And I want to also congratulate the NAFC too for even taking on a task to to develop a survey to gather information about how mental health is impacting incontinence, because it really does truly go hand in hand. And mental health is such a big topic right now. Sometimes there’s not enough resources for everyone, but incontinence is sometimes overlooked.

And then the mental health impact, the psychological impact of incontinence is also overlooked as well. So I really appreciate you all taking the time to shed more light and providing, you know, some publicity to not only incontinence, but also how it affects mental health.

Bruce Kassover: Well, thank you for those kind words, and thank you for joining us today.

Tina Harris: Absolutely. Thank you.

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.