Now that we’re a full year into living with the COVID-19 pandemic, NAFC wanted to take a closer look at how those living with incontinence were dealing with the unique challenges they were facing in our new normal.
That’s why we conducted a survey in December 2020 and January 2021, to ask patients directly how they were managing their symptoms, seeking treatment, interacting with healthcare providers, and finding and using protective absorbent products during this time.
We expected to get some feedback on the ups and downs of appointments via telehealth, and we assumed that we’d hear how some patients had put off or avoided seeing a doctor out of an abundance of caution. But what we got was far more illuminating – deep, meaningful insight into many of the real-world challenges that people with bladder leaks have had to navigate in their efforts to find dryer days.
First, some basics. The majority of the people who took our survey reported that their incontinence issues had stayed the same, and a small group even answered that they had actually improved! Many people felt that because they were home all the time, even working from home, things were easier to manage. After all, at home, everyone is closer to a bathroom, and there’s much more privacy when it comes to handling leaks and symptoms.
However, nearly 35% of people said that their bladder leaks had worsened since the pandemic started, and almost 25% felt that it has become even more difficult to manage. As one responder put it: “Intermittent has become more…”mittent”.
They gave us many reasons for this. Here’s a closer look at some of what we learned about why managing bladder leaks has become so much harder…
Many people have learned to manage symptoms without seeing a physician.
Over half of those who answered our survey said they had seen a doctor in the past 9 months, and of those, most of the appointments were in person (only 16% of people who saw a doctor did so via telehealth).
But that still meant that nearly half of patients had not seen a doctor during this time, either because they have had trouble getting an appointment or were nervous to see a physician because of the pandemic (whether it was their normal doctor or a specialist.)
We heard the frustration of not being able to see someone for their symptoms loud and clear:
“Doctors are hiding. Impossible to get an appointment. Impossible to speak my doctor by phone (and this has always been the case, long before Covid-19.)”
“I’ve been unable to be seen by a doctor, although my problem has become much worse.”
“I haven’t been able to access my physiotherapist.”
“I haven’t been able to see a doctor due to not wanting to go into public places and more where people are sick.”
“I need to see a specialist. I need to know what my options are and doing any of this right now is seemingly impossible.”
Access to absorbent products has been difficult, and for some, the cost has been hard to manage.
Along with being harder to see a doctor, for many, getting their normal products to manage leaks has been an issue. Nearly 20% of the people who answered our survey said that it has been much harder to get the absorbent products they need, either due to a change in their finances (35%), concerns about going out to purchase products (35%), or products just being harder to find (53%).
Individually, we heard that job losses have made it harder for many to afford absorbent products, with some having to buy more affordable – but less effective – brands to get by. For those who have tried ordering products vs. going out to the store, availability of products has been an issue, as have slower-than-normal delivery times. And those who did venture out to stores found that it wasn’t only paper towels that were in short supply; some retailers have limited the number of packages of absorbent product that can be purchased at one time, and not all products have been readily available.
There’s also the issue of a lack of public restrooms. With so many retailers limiting the number of people in their stores, and with so many public restrooms being closed (after all, restaurants are often the first choice for a last-second stop), some people have chosen to double up on absorbent products when they go out just to avoid having leaks. This may be leading to higher overall out-of-pocket costs along with an increased demand for products at a time when stock is already limited.
Finally, for those who rely on others to do their shopping for them, it’s been more difficult to find someone willing to go out to purchase products.
“Availability of absorbent products has been an issue. Sometimes my regular brand or size of adult diaper is out of stock.”
“I have had to economize on the cost of large pads”
“Getting absorbent products online has been tough, with delays in shipping or items out of stock.”
“Stores have been out of incontinence products I use”
“I have avoided public restrooms all together during the pandemic which has meant having to wear more absorbent bladder control products.”
“Getting my diapers on time has been a challenge at times due to major shipping delays.”
“It’s harder to find people who can/will drive me to stores”
The pandemic is keeping everyone at home. But even essential outings are made difficult, or even impossible, due to the lack of public restrooms.
We heard from many, many people that outings are extremely stressful, not just because they are scared of contracting the virus, but also because finding an open public restroom (or one without a line) is so difficult. We already know that incontinence can be an isolating condition, but this added layer of concern has made it more stressful and solitary than ever before.
“Traveling or being away from my house for longer periods is almost impossible.”
“Finding open bathrooms has been a challenge.”
“With public bathrooms being closed, there are very limited places to go, leading to increased accidents. This also impacts changing soiled briefs because there are no places to change.”
“Having to change diapers while outside the house has become almost impossible.”
I have been using more of my overnight pads during the day when I go out due to the lack of available toilet facilities. I also have been controlling my fluid intake on days that I have to go out for the same reason. Lack of open toilet facilities has been a nightmare
With more time spent at home, many reported lower levels of physical activity, which only makes their incontinence worse.
While some people have found it easier to manage their condition while at home because they are near a toilet, others have found that their control is not as good as it might otherwise be since they give in to their urge to urinate as soon as the feeling hits.
Being stuck in the house all day, even for work, has caused many of us to be much more sedentary than we would normally be. With reduced access to gyms, with fewer ways to workout, and with more time spent sitting around, higher levels of inactivity have led to weaker muscles for some, and this may contribute to more bladder leaks.
“It seems like the more sitting I do the more leakage I have. The more difficult it becomes to stand up and make it to a bathroom on time. I also struggle with the moment I feel I have to pee – any movement can cause leakage and once I begin to leak… it’s all over with.”
“Less walking, no tennis, no biking less opportunity to keep active”
“With the Pandemic, opportunities to travel outside of my home are limited. With constant access to a bathroom, I am continually giving in to my need to use the bathroom. The limited times I venture out, I have experienced an increased number of incontinent episodes because I no longer have the control I once did.”
“Very little activity.”
“Same as normal in that I have to pee ALL the time but sitting more does cause an issue.”
“Nothing new, just gradually worsening incontinence. I’ve been able to see my doctor as needed. Possibly less physical activity has something to do with it.”
“Inactivity…homebody … unable to continue with gym classes i.e. swimming/exercises for seniors/Zumba.”
Stress and time management have been hard to manage.
There’s no doubt that the coronavirus has increased stress for most of us – these haven’t exactly been an easy 12 months, after all. Beyond the direct threat of the virus, there’s also job insecurity, social isolation, political and social unrest – a whole host of stressors that have made this past year one that many of us would rather forget.
For many of those who live with the added burden of incontinence, it has been even worse – in fact, all this stress may have caused an increase in their symptoms, too. Incontinence has long been known to ratchet up stress and anxiety in those it touches, and studies have found a link between the severity of bladder leaks and psychological stress.
For several people, the time it took to manage their condition was also a strain. Between the demands of work, caring for family members who are home all the time, and dealing with incontinence on top of everything else, it was just too much to handle all at once. Those that rely on regular caregiver visits didn’t necessarily have it any easier, since visits from those they counted on for regular assistance may not have been coming by as frequently.
“I am peeing my pants more. I get upset and pee more.”
“More leakage, harder to hold, high frustration levels.”
“It’s worse during COVID because of the anxiety and depression it brings of always being by a toilet all the time.”
“I don’t know. The frustration has greatly increased.”
“Getting the pads, having time to think of myself, has been challenging.”
“When I am out there are less public toilets open, causing stress and anxiety”
“Increased anxiety and feelings of hopelessness.”
“Time is a challenge”
Many people complained of experiencing more frequent UTIs.
This one, we didn’t expect. But there could be several reasons for it.
Stress. Higher stress levels may lead to more UTIs. When you feel stressed, your body produces higher levels of cortisol, which can negatively affect the immune system.
Hygiene. With staying at home 24/7 becoming the norm, you may think there’s no reason to shower regularly, and you wouldn’t be alone. At the start of the pandemic last year, Advanced Dermatology did a survey to learn how staying at home was impacting the daily habits of people. They found that 1 in 3 people reported showering less. However, poor hygiene habits can actually trigger UTI infections, which may be what we’re seeing here.
Eating the wrong foods. It probably comes as no surprise that COVID has brought out some unhealthy eating habits in many of us. While many are cooking at home more than ever before, we’re also finding it easier to snack more than usual, given that we’re so close to the kitchen at all times. And, one study found that as many as 47% of the responders said they were eating more sugar.
We don’t know if some or all of these are the culprits, but the feedback we got was clear – UTIs are on the rise:
“Almost constant UTI’s”
“I am having UTI almost monthly. I feel more pressure in my lower pelvis than a year ago.”
“I have a UTI again.”
“I have dealt with incontinence for years, but for the last 12 months it has gradually got worse mainly because I am been treated for UTI`s”
Odor is an issue.
For some people, being at home has led to less grooming, diminished physical care, and increased odor. Knowing that we may not see anyone outside of our household for days gives us less of a reason to keep up with personal hygiene. And when you suffer from frequent bladder leaks, that can lead to an odor problem.
Some people also reported not feeling as nervous of people seeing their leaks, and this has made them less diligent when it comes to managing their conditions.
“I have been depressed, neglecting my grooming and at times the odor is worse than usual.”
“I need assistance to clean up my room, I need to learn how to control odor.”
“My yoga and other exercise classes are virtual so I am not worried about others seeing or smelling my bladder leaks. Unfortunately, this has made me less meticulous about managing my incontinence.”
What has become clear to us is that managing at home, while a positive experience for some, has been very difficult for others. That’s why over the next several weeks, we’ll be sharing articles and tips on how to address many of these challenges to help you stay dry – even when you’re confined to your own four walls. Stay with us to learn more.