Overcoming Gut Health Stigma: Getting the Care and Compassion You Need

Overcoming Gut Health Stigma: Getting the Care and Compassion You Need

When it comes to gut health problems, it’s not bad enough you can have gas that people might smell, bloating that makes you look pregnant, debilitating cramping and pain, frequent trips to the bathroom that can leave you exhausted mentally and physically, unpredictable bowel movements that can cause accidents and an inability to follow through on plans, but on top of all that, because of the nature of your issues, it can also cause stigma.

Stigma is when society labels an individual as abnormal. Stigma can be something you experience, 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. But when it’s internalized that’s really the worst because then 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.

I’d like to 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.

For starters, I want you to know that you’re not alone.

A 2013 Fox News Survey showed 74 percent of Americans are living with digestive symptoms like diarrhea, gas, bloating and abdominal pain. And whether a given individual has those symptoms now, everyone has had them at some time and knows what it’s like to have gas, constipation or diarrhea. Literally everyone, except maybe small children, has had those at one time or another.

In terms of actual diagnoses, as of 2015, it’s estimated that 1.3% of US adults (3 million) had been diagnosed with Irritable Bowel Disease (IBD), which is either Crohn’s disease or ulcerative colitis.

In terms of Irritable Bowel Syndrome (IBS) studies have estimated that between 10% and 15% of the entire U.S. population has it. That’s more than 1 out of every 7 people. So if you’re at a party with 10 people, someone else probably has IBS besides you. A party with 30 people? 3 more besides you. You’re not alone. That being said, in one study, more than half of people with IBS believed that they were treated differently because of their IBS.

How about gastritis? In the U.S., it’s estimated to affect 25-35% of the entire population!

And in my experience talking to clients (many of whom aren’t coming to me for gastrointestinal issues) I have yet to meet more than 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 #3 or 4 stools with a clean wipe. That’s almost non-existent, because we’ve all taken antibiotics, we’ve all eaten a standard American diet, we’ve all taken NSAIDS or other prescriptions meds, we’ve all been subjected to a medical system that doesn’t focus on root causes. So if you take nothing else from this article, 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 may not be experienced.

But I don’t want to underplay experienced stigma, as experienced stigma is real. So let’s talk a bit about it.

One study on IBS found that co-workers and employers were the greatest source of stigmatization, followed by health care providers and friends.

Stigma can result from

  • Being reluctant to tell others that you have a gastrointestinal condition.
  • Being unable to fulfill your expected role in a relationship.
  • Being unable to fully participate in daily life, work and social activities.
  • Lack of awareness and knowledge about your condition in the general public.
  • Lack of awareness or even belief in your condition among allopathic, or traditional medical doctors (particularly with conditions like SIBO, candida or dysbiosis).
  • A perception that your condition isn’t taken seriously, which is much more prevalent with conditions like IBS where there’s no physical evidence of a problem than with conditions like IBD.
  • And 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 is again the case more with IBS than IBD.

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). Internalized stigma in both conditions is associated with an increase in health care utilization and reductions in health-related quality of life, psychological functioning, and perception of health competence. And again, perceived stigma is greater with IBS, with IBS patients showing more perceived stigma from their health care providers than patients with IBD. As a result, 40% of people with IBS reported choosing self-care after being dissatisfied with their health care provider, which is a shame because often working with a functional medicine provider in conjunction with your allopathic provider 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 if you’re someone who doesn’t have a gastrointestinal condition and you don’t fully realize how debilitating it can be, read this:

  • 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 wished that they were dead.

Let’s talk about the different domains where gastrointestinal issues can cause stigma. As I mentioned, one study on IBS found that most patients felt most stigmatized by their employers and co-workers, followed by their doctors and friends.

Work

If you have been struggling at work, it’s best to have an honest, straightforward conversation with your supervisor or HR department about your condition and see if there are accommodations they can give you, like the ability to work from home when having a flare. It’s better to be honest about your condition than have them think you’re unreliable.

If your workplace has 15 or more employees, you have a diagnosed illness like IBD or IBS and your symptoms significantly impact on a major life ability, your condition should be a covered disability under the Americans with Disabilities Act (ADA). 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 the disabled individual, as long as these accommodations do not result in “undue hardship”. You can look at the ADA legislation to understand more what reasonable accommodations are.

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 special 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. It might help to be armed with statistics for your condition, like the ones I found on IBS – that at least one third of employees with IBS miss an average of one day of work per month due to their IBS symptoms and they have 15-21% greater loss in work productivity because of gastrointestinal symptoms than employees without IBS. Also, IBS is the second leading cause, behind the common cold, of workplace absenteeism. So getting you the help you need to is in their best interests.

Also, there is something called EFundYourHealth that will match any money you raise to cover the cost of your functional or alternative medicine care. Your medical provider will have to set up a fundraiser for you and give you a code to get in, then you can ask friends and family to help contribute and they will match up to $250. I have an account set up with them and can give you a code to get started if you’re working with me.

Doctors

If you feel like you’re being stigmatized by your doctor because of your condition or your reaction to your care, it may not be about you. It may be about the fact that your doctor doesn’t have a solution for your problem and that makes them self-conscious or insecure about their inability to help you. 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.

Second, I can tell you that it is important to advocate for yourself with healthcare providers, but I myself 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 most 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 honestly, your allopathic doctor isn’t really free, from a liability standpoint, to give you anything that doesn’t fit in with the standard of care. Plus, most doctors won’t order a test whose results they don’t know what to do with. So keep that in mind if you’re requesting microbiome stool sequencing or Organic Acids Testing, for example, from a doctor who’s never seen those tests before. To some extent, you have to understand the limits that an allopathic doctor’s knowledge and scope of practice impose on them. If you want to take a non-pharmaceutical and functional medicine approach to your treatment, you will likely need to seek out a functional medicine provider, which includes functional medicine MDs, naturopaths, a chiropractor who practices in gut health as well, a functional nutritionist or a health coach like me who specializes in gut health.

These types of practitioners don’t typically take insurance (although some people are able to pay with their FSA or HSA) but they will be able to spend much more time with you, will not stigmatize you for your condition, will take your complaints and ideas seriously and will offer natural methods of healing, including changes to diet, lifestyle and the use of herbal medicines.

But 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 ordered by an MD, so it’s always worth checking whether your doctor will order the test for another practitioner to interpret. My approach with my own gut and autoimmune health is to 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. You have to take responsibility for finding solutions or possible solutions to your problem. If your provider isn’t solving your problem and isn’t open to tests or medications you suggest (or even can provide peer-reviewed evidence to support), and/or you feel stigmatized by your provider, it may be time to transfer your medical care elsewhere. I used NextDoor.com to ask neighbors about providers that are open to integrative or alternative medicine. You can also choose, at your own expense of course, to talk with the doctor for the length of an appointment about their approach to medicine and their willingness to order tests for you or try non-traditional approaches. Or talking to a nursing assistant over the phone may also be a way to find out more about the doctor. But you shouldn’t have to put up with stigma at the doctor’s office.

Personal Relationships

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.

While this article is not just about IBS, for people with IBS in particular, whether it’s been diagnosed or not, because there aren’t physical signs of disease in your intestines, 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 and 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 that’s not the same as it being psychosomatic. And as a result of the connection between the gut and the brain via 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 #20 with Corey Deacon, you should listen to that episode because he talks a lot about the gut brain connection, how it’s measured, and how to fix gut problems that originate in the brain due to incorrect electrical signals.

Again, talking about your gut condition with friends and family may help to reduce psychological stress and improve relationships, because it will help people understand why you may have to be absent from activities, may be less reliable that you’d like, and it may lessen your feelings of isolation. And who knows, someone you tell may have gut issues of their own. Positive relationships can be hugely helpful when it comes to managing symptoms and helping you out when you’re having a flare with transportation, child care or errands, or for a colleague, covering for you at work.

But if you find that the person you’re sharing with does not take you seriously or treat you with kindness, that may not be a person that’s good for you right now. You have a right to be taken seriously, believed, and be treated with kindness and compassion.

So if you’re a loved one of a person with gut issues – here are some key pointers for you:

  • Let your friend, romantic partner or family member know that you think they’re brave for confiding in you. It takes a lot of guts to talk about this kind of stuff.
  • If they’re in pain, ask them if there’s anything you can get for them, or offer to leave so that they can rest.
  • Tell them that they have nothing to be embarrassed about and what they’re going through is not their fault.
  • Ask them if it’s okay to share about their condition with other people before doing so.
  • If you hear or see someone else making jokes at their expense (like for spending a long time in the rest room for example), defend them. Let the person know that their comments are inappropriate and that your friend/family member/colleague suffers from a gastrointestinal disorder and those types of comments are not acceptable (if they gave you permission to share about it).
  • Offer to go with them to a doctor’s appointment if they have been feeling like they are not being heard by their physician and be a moral support.
  • Encourage them to confide in you when they’re feeling down; the psychological impact of having IBS or other gastrointestinal issues are real.
  • Help to educate other people in your life about their condition, especially mutual friends or colleagues who may not know what it is.
  • If they’re unable to follow through on plans due to a flare, don’t pressure them to come and don’t make them feel guilty. They probably already feel bad about cancelling. Just let them know that you understand, and offer your support if they need anything.
  • If you are planning to go out, make sure there are bathrooms available.
  • Gut health issues are often lifelong battles with periods where you loved one is better and periods where they are worse. 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; if you had a similar problem, you’d do the same.
  • Don’t tell them it’s all in their head or psychosomatic. This feels condescending. If you suspect their condition is related to stress, rather, point them to stress management techniques that may be useful. But ask more questions, give fewer answers.
  • 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 emotions back to them (“I hear you, you’re feeling really down right now because you can’t make it to the party”), but don’t try to troubleshoot their problem unless they’ve asked for your help.
  • Support their dietary restrictions – this is what helps them avoid flares. Don’t tempt them with foods that cause a flare. Talk to them about their greatest temptations and if there are foods they really don’t want eaten around them that are too tempting to resist but will cause a flare.

Finally, talking to a new romantic partner may be the most tricky, so here’s some advice:

  • Take it in baby steps, this can happen over multiple conversations.
  • Explain to them about your condition and how it affects your life.
  • You don’t have to tell them all the gory details of your symptoms and toilet habits when you’re just getting to know one another.
  • Share how it makes you feel (not sexy, bloated, nauseous, needing to be near a bathroom).
  • If you’re intimately involved, share how it can impact your libido (not feeling sexy, pain, need to use the toilet, fear of accidents) and if there are better times of day to be romantic – like first thing in the morning rather than after dinner.
  • Make sure your partner’s ego isn’t impacted (people’s egos are tightly tied to their feeling sexually desirable) by explaining that it isn’t about them and is just that you’re having a flare. Make sure they know you still find them sexy and desirable but just aren’t in a physical place yourself to be intimate.

In sum, life is messy, being honest and open is more likely to lead to closeness and intimacy than hiding. You deserve a romantic partner who shows you compassion and support for your condition, so don’t settle for less.

And some pointers on stigma around food and special or restricted diets:

  • If you’re eating out (when that becomes possible again) or ordering take out, pick the restaurant if possible.
  • Check the menu and call ahead to the chef to make sure they understand how serious your diet issues are.
  • If you’re cooking/eating at home, you can make bulk quantities of gluten-free or non-grain side dishes (like pasta, quinoa, rice, riced cauliflower, etc.). If another person cooking doesn’t want to eat gluten-free, they can just pull out some of your pre-cooked side dishes or base starch, then add the other ingredients to it for you.
  • Batch-cooking and freezing meals so you can eat your own thing can also be helpful.

I hope that those pointers for dealing with stigma with others are helpful.

So finally let’s talk about internalized stigma you may be experiencing. 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, your future prospects?

Now imagine a child who’s totally innocent and has the same condition. What would you say to that child? Are you being as kind yourself as you would be to that child? Because you should be, you should give yourself the same kind kindness and compassion, even if you messed up and ate something you shouldn’t have, for example, as you would that child.

Are you taking time to care for yourself or are you still trying to put everyone else’s needs first? It’s like the oxygen mask: you have to put your own on before taking care of others’. That means you have to take the time to practice self-care, which 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 stop feeling like you’re a bother. You have to speak up 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 getting better.

And finally remember, what you’re going through now is not going to last forever. Five years from now, if you keep searching, keep trying and keep advocating for yourself, most likely this will all be a distant memory. So don’t lose hope. There is always a path to healing and you will find it. You are enough, and you are good, and you need to love yourself through this challenging experience.

And if you want help with your gut issues, you can make a free, 1-hour Breakthrough Session appointment with me to talk about it.

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