Overcoming Gut Health Stigma

Welcome to The Perfect Stool. This is Lindsey Parsons, your host, and today I'm going to be talking about overcoming gut health stigma and getting the care and compassion you need. So when it comes to gut health problems, it's not bad enough you, you have gas that people might smell, or bloating that makes you look pregnant and feels terrible, or debilitating cramping and pain, or frequent trips to the bathroom that can leave you exhausted mentally and physically, or unpredictable bowel movements that can cause accidents and an inability to follow through on plans. But on top of all of that, because the nature of your issues, it can also cause stigma. So stigma is when society labels an individual as abnormal, and stigma can be something you experience or perceive or internalize. If you're experiencing stigma, it's when you're receiving concrete signs or actions of bias or prejudice against you from someone else. If you're perceiving it, you may be sensing discrimination against yourself from others, but the signs are subtle enough that you can't be 100% sure. And when it's internalized, that's really the worst because that's when you've absorbed and now believe certain stereotypes about yourself because of your condition, like I'm weak, or I'm unreliable, or I'm always in bad health and always will be, or I'm not a good fill-in-the-blank—worker, friend, mother, father, girlfriend, boyfriend, husband, wife, etc.—or the mother of all internalized self-criticism: I'm not enough. So today I want to try and undo some of that stigma and programming to help you see yourself as whole, healthy, healable, strong, and good enough in and of yourself and in relationship to others. So for starters, I want you to know that you're not alone. A 2013 Fox News survey showed that 74% of Americans are living with digestive symptoms like diarrhea, gas, bloating, and abdominal pain. So that's like almost everybody, right? That's almost three-quarters. And whether a given individual has those symptoms now, everyone has had them at some point, right? Everyone knows what it's like to have gas or constipation or diarrhea, except maybe small children. So people have that stuff from time to time, so don't feel like you're alone and nobody knows what you're going through. In terms of actual diagnoses, as of 2015, it was estimated that 1.3% of US adults, which is about 3 million people, had been diagnosed with irritable bowel disease, which I'll refer to as IBD going forward. And that's either Crohn's disease or ulcerative colitis. And those are diagnoses where you actually see sores or ulcers on the intestines. In terms of irritable bowel syndrome, or IBS, which is where you have a lot of the same symptoms but you don't actually see any physical proof of a condition, it's estimated that between 10 and 15% of the entire U.S. population has it, which means that's more than one out of every seven people. So if you're at a party with 10 people, somebody else probably has IBS besides you. A party with 30 people, 3 more besides you. So you are not alone. But that being said, in one study, more than half the people with IBS believed they were treated differently because of their IBS. And then how about gastritis? In the US, it's estimated to affect 25 to 35% of the entire population, although while some of it is chronic, a lot of it's acute and goes away quickly. But I can tell you just that in talking to clients, many of whom aren't coming to me for gastrointestinal issues, many are coming for weight loss, for example, I've yet to meet more than maybe 2 people who think they have no GI issues at all. No pain, no constipation, no bloating, no soft stool or diarrhea, perfect Bristol stool chart, number 3 or 4 stools with a clean wipe. That's almost like nonexistent because we've all taken antibiotics, we've all eaten a standard American diet, we've all taken NSAIDs like ibuprofen and aspirin or other prescription meds. We've all been subjected to a medical system that doesn't focus on root causes or lifestyle issues. So if you take nothing else from this podcast, please take the information that almost everyone has gut issues of some sort. So if you're experiencing stigma, much of it may be perceived and internalized, but it may not be experienced, which is to say it may not actually be happening. But I don't want to underplay stigma, as experienced stigma is real. So let's talk a bit about it. So one study on IBS found that coworkers and employers were the greatest source of stigmatization, followed by healthcare providers and friends. So stigma can result from, first, just being reluctant to tell others that you have a gastrointestinal condition. Two, being unable to fulfill your expected role in a relationship. Three, being unable to fully participate in daily life, work, and social activities. Four, the lack of awareness and knowledge about your condition in the general public. Five, a lack of awareness or even belief in your condition among allopathic or traditional medical doctors, particularly if you have a condition like SIBO or small intestine bacterial overgrowth, Candida, or dysbiosis. 6, a perception that your condition isn't taken seriously, which is much more prevalent with conditions like IBS where there is no physical evidence of a problem than with conditions like IBD. And then finally, stigma can come from other people's perceptions that your condition is self-inflicted or all in your head or being used as an excuse to get out of doing things, which again is going to be more likely the case with IBS than with IBD. But it's important to identify and address stigma because the research on perceived stigma in IBS and IBD shows that it negatively impacts clinical outcomes, including increased depression and anxiety, lower quality of life, and reduced self-esteem and reduced self-efficacy, or the ability to advocate for yourself. And internalized stigma in both conditions is associated with an increase in healthcare utilization and reductions in health-related quality of life, psychological function, and perception of health competence. And again, perceived stigma is greater with IBS, with IBS patients showing more perceived stigma from their healthcare providers than patients with IBD. And as a result of that, 40% of people with IBS reported that they chose self-care because they were dissatisfied with their healthcare provider, which is a shame because it often helps to work with both a functional medicine provider in conjunction with your allopathic provider who can give you access to tests and drugs that can be paid for by insurance and may be quicker or more effective in treating your condition. And so if you're someone who doesn't have a gastrointestinal issue and you don't fully realize how debilitating it can be, just hear this. These are a couple statistics specifically related to IBS, but I'm sure that the same will apply to many other gastrointestinal conditions. In a global survey of 1,966 individuals who suffer from IBS, on average, patients surveyed said they would give up 15 years of their life to live symptom-free. In another multi-continent survey involving a little over 500 people who suffer from IBS, 11% agreed that when their symptoms were at their peak, they often wish they were dead. So let's talk a little bit about the different domains where gastrointestinal issues can cause stigma. So as I said, one study on IBS found that most patients felt most stigmatized by their employers and coworkers, followed by their doctors and friends. So let's talk about how to handle it if you're dealing with stigma at work. So obviously it's challenging to have a condition that causes pain, accidents, frequent bathroom trips, or non-gastrointestinal symptoms like fatigue or brain fog, because it can mean that you may may need to leave a meeting suddenly, miss work frequently, are not at your best, or you may need to work at home on a regular basis, or you can't eat at work events, or you need frequent or extended time off. As a result, there may be benefits of disclosing your condition to your employer if you haven't yet. In particular, you may be able to adjust your work situation to provide the flexibility that you need. So my advice about talking to your employer is, number one, if you've been struggling at work, it is best to just have an honest, straightforward conversation with your supervisor or your human resource resources department about your condition and see if there are any accommodations they can give you, like the ability to work from home when you're having a flare. It's much better to be honest about your condition than have them think that you're just flaky or unreliable. And then the other thing is, if your workplace has 15 or more employees and you have a diagnosed illness like IBS or IBD and your symptoms significantly impact on a major life ability, your condition should be covered as a disability under the Americans with Disabilities Act, or the ADA. And the ADA requires your employer to provide you all the usual work-related opportunities, including hiring, promotions, salary raises, and training opportunities, and to make reasonable accommodations to the limitations of your disability, as long as these accommodations do not result in, quote, undue hardship. So you can look at the ADA legislation online or Google it to understand more about what reasonable accommodations are considered to be. Then also, if finances have been an obstacle in getting the care you need from a functional medicine provider, you might ask your employer for assistance in covering the costs of tests or care because they're already paying a lot if your condition is causing you to miss work or meetings or spend a lot of time in the bathroom. So you might want to go to them armed with some statistics like the ones I found on IBS, that at least one-third of employees with IBS miss an average of one day work per month due to their IBS symptoms, and they have a 15 to 21% greater loss in work productivity because of the gastrointestinal symptoms than employees without IBS, and that IBS is the second leading cause behind the common cold of workplace absenteeism. So it's also in the best interest of your workplace to get you the help that you need. And another thing that you might be able to do if finances are an issue in getting some functional medicine care is there's something called eFundYourHealth.org, and it's like a GoFundMe type of thing, but just for functional medicine care. And they will match up to $250 of any money you raise for your treatment with a functional medicine provider. So your medical provider has to give you a code to help you set up a fundraiser. But after that, you can ask friends and family to contribute, and they'll match up to $250. And I have an account with them, and I can give you a code to get started if you're working with me. So the next big place where patients experience stigma is at the doctors. And the first thing I want to say about doctors is just, if you're feeling stigmatized by your doctor because of your condition or your reaction to their care of your condition, it may not be about you. In fact, it, it really isn't about you. It's likely about the fact that your doctor doesn't have a solution for your problems and that makes them feel self-conscious or insecure about their inability to help you. So I've heard from doctor friends that gastroenterologists would love to pawn off their IBS cases on someone like me because they don't know what to do with them. And then second, I can tell you that it's important to advocate for yourself with healthcare providers, but I know what it's like to be in a doctor's office these days. Your provider has about 7 minutes to spend with you, and they don't want to take the time to talk in depth about your situation or hear about what you've heard in a podcast or on the internet. And you probably don't want to sound like a crazy person asking about something that isn't evidence-based or isn't the standard of care. And so really, you have to understand that your allopathic doctor is not free from a liability standpoint to give you anything that doesn't fit in with the standard of care, because if that goes wrong, they're going to be liable for it. So for the most part, a doctor is not going to say order a test where they don't know what to do with the results. So like, if you're saying, hey, I want to get like microbiome stool sequencing or an organic acids test from a traditional allopathic doctor, they're not going to know what that is or what to do with it. And so they're not going to order it because it would be pointless. So to some extent, you have to understand the limits of an allopathic doctor's knowledge and scope of practice and what those limits then impose on them in terms of what they can do. So if you're interested in taking a non-pharmaceutical or functional medicine approach to your treatment, you'll likely need to seek out a functional medicine provider. And when I say functional medicine, I'm talking about going for the root cause of your problem and solving it at the base, as opposed to just finding a pharmaceutical product which covers up your symptoms. So functional medicine providers include functional medicine MDs, naturopaths, some chiropractors who practice in gut health, functional nutritionists, or a health coach like me who specializes in gut health. So these types of practitioners don't typically take insurance, although some people are able to pay with their FSA or their HSA. But the difference with a functional medicine provider is that they're going to spend a lot more time with you. They're not going to stigmatize you for your condition. They will take your complaints and your ideas seriously, and they will offer natural methods of healing, including changes to diet and lifestyle and the use of herbal medicines. But that being said, an allopathic physician can be a good partner in ordering tests like nutrient deficiency tests, for example, that are usually covered by insurance. And depending on your policy, you may have some out-of-network coverage for other lab tests if they're ordered by an MD. So it's always worth checking whether your doctor will order the test for another practitioner to interpret. So my approach with my own gut and autoimmune health is to just find a general practitioner who's willing to order tests for me if I know what to do about the results. But in the end, you know your illness better than anyone, and if you don't advocate for yourself, no one will. So you do have to take responsibility for finding solutions or possible solutions to your problem. And if your provider isn't solving your problem and isn't open to tests or medications you suggest, or, or maybe even provide peer-reviewed evidence to support, and you feel stigmatized by your provider, it may be time to, to go somewhere else. So I've used nextdoor.com to ask my neighbors about providers that are open to integrative or alternative medicine. And you can also choose to have an appointment with the doctor just to talk about their approach to medicine and their willingness to order tests or try non-traditional approaches. But of course, you'll have to do that at your own expense, not at your insurance's expense. Or perhaps you can talk to a nursing assistant over the phone to find out more about the doctor and their approach. But in any case, you should not have to put up with stigma at the doctor's office. Finally, let's talk about dealing with stigma in personal relationships. So a study done in 2014 found that more than half of the participants with IBS felt that they were treated differently by peers, family, friends, and colleagues due to their diagnosis. So while we're not just talking about IBS today, for people with IBS in particular, whether it's been diagnosed or not, there aren't any physical signs of your disease in your intestines. So the stigma may come from loved ones or peers who think it's all in your head or being used as an excuse to get out of activities or events. And the reality is that IBS is linked to a dysfunction between the brain and the intestinal nervous system. So in some sense, it is in your head, but that doesn't mean it's any less real, and it's not the same as it being psychosomatic. So as a result of the connection between the gut and the brain that are connected by the vagus nerve, stress can manifest in your gut, and gut issues may be caused by your brain. And if you didn't listen to my podcast number 20 with Corey Deacon, you should listen to that episode because he talks a lot about the gut-brain connection and how it's measured using electrogastrograms and how to fix gut problems that originate in the brain due to incorrect electrical signals that sometimes result from concussions. But again, if you talk about your gut condition with your friends and family members, it may help to reduce your psychological stress and improve your relationship, because it helps people understand why you may have to be absent from activities or maybe less reliable than you'd like, or it may just lessen your feeling of isolation. And you know, you never know if somebody else may have gut issues of their own if you share. So a positive relationship can be hugely helpful when it comes to managing your symptoms and just helping you out when you're having a flare with, say, childcare or errands or maybe a colleague for covering for you at work. But if you do find that the person you're sharing with doesn't take you seriously or treat you with kindness, that may be a person who's not good for you right now. You have a right to be taken seriously, to be believed, and be treated with kindness and compassion. So if you are a loved one of a person with gut issues and they have asked you to listen to this podcast, here are some pointers for you. And so do share this podcast with your loved ones. First of all, Let your friend or romantic partner or your family member know that you think they're brave for confiding in you, because it takes a lot of guts to talk about this kind of personal stuff. Number 2, if they're in pain, ask them if there's anything you can get to help them, or just offer to leave because they may need to rest. Number 3, tell them that they have nothing to be embarrassed about and that what they're going through is not their fault. Number 4, ask them if it's okay to share about their condition with others before doing so. And number 5, then, if they gave you permission and you hear somebody else making jokes at their expense, like for spending too long in the restroom or going too frequently, please defend them. Let them know that their comments are inappropriate and unacceptable and that your friend or family member or colleague suffers from a gastrointestinal disorder. Obviously, if they gave you permission to share about it. Number 6, offer to go with them to a doctor's appointment if they've been feeling like they're not being heard by their physician, and just be there as a moral support. Number 7, encourage them to confide in you when they're feeling down because the psychological impact of having IBS or other gastrointestinal issues is real. Number 8, help to educate other people in your life about their condition, especially mutual friends or colleagues who may not know what it is. Number 9, if they're unable to follow through on plans due to a flare, don't pressure them to come out and don't make them feel guilty about it. They're probably already feeling bad about canceling, so just let them know you understand and offer your support if they need anything. Number 10, if you are planning to go out, make sure there's bathrooms available. Number 11, gut health issues are lifelong battles, and there's periods where your loved one is better and periods where they're worse. So don't blame or insult them for being in a worse period or going down rabbit holes or trying anything, including a million different supplements to solve their problem, because if you had a similar problem, you would do the same. Number 12, don't tell them it's all in their head or psychosomatic. That feels very condescending. If you suspect their condition is related to stress, maybe you could just point them to some stress management techniques that may be useful, or maybe agree to take a class with them on something like meditation or yoga. Just ask more questions, give fewer answers, because it's not your responsibility to solve their problem. If they ask for your help, give it, but otherwise just listen compassionately. Reflect their pain and emotion back to them, like, "I hear you. I hear that you're feeling really down right now because you can't make it to the party." but don't try and troubleshoot the problem unless they've asked for your help. And last, support their dietary restrictions. This is one of the most important things you can do because this helps them avoid flares. So don't tempt them with foods that cause a flare. Talk to them about what their greatest temptations are, and if there's foods that they just cannot resist if they're around, please don't have them in the house. It's just inconsiderate. You don't want to tempt them and have them have a flare. Finally, if you're talking to a new romantic partner, this may be the most tricky situation you could find yourself in. So here's some advice. First of all, you can take it in baby steps. You don't have to like blurt it all out all on the first date, right? So it can happen over multiple conversations. You can start just by saying you have a condition and you know it affects your life in this way. You don't have to give them all the gory details of your toilet habits and your symptoms just while you're getting to know each other, although you may want to share that later on. But you can share how it makes you feel like not sexy or bloated or nauseous or needing to be near a bathroom. And then if you are intimately involved, you can share that it does impact your libido sometimes, like you may not feel sexy or you may be in pain or need to use the toilet or have a fear of accidents. And then you may point out if there's better times of the day for you to be romantic, like maybe first thing in the morning rather than, say, after dinner. But also just be thoughtful about your partner's ego, because people's egos are tightly tied to their feeling sexually desirable. So you might just explain to them that it's not about them when you're having a flare. Just make sure they know you still find them sexy and desirable, but you're just not in a physical place yourself to be able to be intimate. But in summation, just life is messy. Being honest and open is much more likely to lead to closeness and intimacy than hiding your problem. And you do deserve a romantic partner who shows you compassion and support for your condition, so don't settle for less. And then a couple pointers just around stigma around food and special or restricted diets, because a lot of us have that, right? So I don't eat gluten, dairy, and soy, so I know what that's like. So if you're eating out, of course, when that becomes possible again, because we're still in the midst of the coronavirus lockdown, or you're ordering takeout, you can be the one to pick the restaurant and then you can check the menu. And if you are going out, call ahead, maybe even talk to the chef and make sure they understand your dietary issues or, you know, have a dish ready for you so you don't have to spend too long studying the menu. Once I was having a business lunch with someone and I, you know, I thought with gluten, dairy, and soy restriction, I just want to call ahead and make sure they have something I can eat that I'm going to enjoy. And so when I walked in, they're like, "Oh, Mrs. Parsons, yes, we have your dish ready." And I was like some kind of VIP, so it was kind of fun. And if you're cooking and eating at home and other people do eat things you don't eat, like gluten, for example, you can pre-make things in bulk. Like, you could make a whole package of pasta and then just have some to grab when you're eating pasta so they don't have to make two different kinds of pasta each time if your family didn't go along with— like mine didn't go along with being gluten-free. Or maybe you— there's side dishes you have, like quinoa, or in my case, like, I'll eat black rice, and while my family might want white rice, So I'll just make those in bulk and then use those, you know, throughout a week when we have dishes that that goes with. So that's just one way to sort of make it easier for somebody else who's cooking for you too. And then you can also batch cook and freeze meals so that you can just eat your own thing sometimes, so that's also helpful. So I hope that all these pointers for dealing with stigma with others have been helpful, but I want to talk for a minute about internalized stigma that you may be experiencing. So I want you to think for a second about these questions. What are the messages you send yourself about your condition? What are the words you tell yourself about your health, your ability to participate in work and activities, and your future prospects? Now imagine a child who is totally innocent and has the same condition. What would you say to that child? Are you being as kind to yourself as you would be to that child? Because you should be. And you should give yourself the same kindness and compassion, even if you messed up and you ate something you shouldn't have, for example, as you would to that child. So are you taking time to care for yourself, or are you still trying to put everybody else's needs first? So it's like the oxygen mask, right? You have to put on your own before you put on your child's. So that means you have to take the time to practice self-care, and that may mean exercise, relaxation activities, Meditation, yoga, and practices that reduce stress, because stress is a real concrete factor in bowel issues. And research shows that exercise and stress reduction are essential components of healing. And do stop feeling like you're a bother. You have to speak up for and advocate for your own needs in your relationships, at work, at the doctor's office. You can't let the opinions of others keep you from living your best life and from getting better. And finally, remember that what you're going through now is not going to last forever. 5 years from now, if you keep searching, you keep trying, and you keep advocating for yourself, most likely this will be a distant memory, or at least it will be under control. So don't lose hope. There is a path to healing, and you will find it. And you are enough, and you are good, and you need to love yourself through this challenging experience. And no doubt, like all challenging experiences, you'll come out a better person on the other side. And if you want help with your gut issues, I do offer free 1-hour breakthrough sessions. So you can set an appointment by going to highdeserthealthcoaching.com and look under Gut Health Coaching or find a link in the show notes. And I hope this was helpful. Here's wishing you all health, safety, peace, and the perfect stool.