Episode 6: How to Talk to Others About IBS or Chronic Illness

This episode is my answer to a question I get asked every week: how do I actually talk to others about my IBS?

In this conversation, you’ll get clear strategies to use when talking to others about your condition so you can gain support from those in your life and reduce some of the anxiety around symptoms.

You can check out the podcast on iTunes here, Spotify here, and on YouTube here! Below is a full transcript of the episode if you prefer to read through it or want notes.

Don’t forget to connect to others in The GUT Community, a Facebook group for those with IBS and digestive disorders to support one another and dive deeper into each episode together.

Welcome to the next episode, I am so excited for today's conversation because we get to talk about something that I get asked about almost daily, and that is, how do I actually talk to others about my IBS?

So one thing that happens whenever someone living with IBS, first off, they have a hard time understanding what's actually going on in their own body, then others around them also don't understand what's going on in their body. and so then there's this disconnect of I don't know really what's going on. Others in my life also don't know what's going on, so I end up isolating myself because I don't know how to fill in the gap. The people in my life, my friends, my family, they don't know how to help me, maybe they're overlooking what's happening. Maybe they're making me feel worse about myself, whatever the reason is, I choose to isolate myself, because I am misunderstood, and I don't know how to fill the gap.

So this episode is going to teach you some really practical ways to fill that gap so that you can take action on it today, and be able to communicate what's going on with you and how those around you can actually help you out. So the first piece of this that I want to make sure that we make pretty clear is that it's going to be harder to be to communicate what's going on for you if you don't know what's going on. And so I want to make sure that we're really clear about that, because I think it's important to say that some of these tips might be hard to take action on if you don't know what's going on, and that's the value of working with credible professionals that you connect with, that might be able to help.

At Gutivate, we are a nutrition counseling practice that does serve clients one to one and in a group setting, and we teach our clients exactly what's going on, we help them figure out their own unique puzzle so that they know exactly what they need, and the communication piece will come out of that in a better way. So if that is you, and if you do need to fill in the gap of that first step, then make sure that you schedule a complimentary consult call to see if we might be a good fit for you, or what options that you may have out there.

Alright, let's dig into the five steps that you can take to talk to others about your IBS. Step number one is to explain what IBS is in simple terms. So a lot of times, there's embarrassment and shame around IBS, because when we think about it, so when you have IBS or any other digestive condition, you think about the worst pieces of it. And so whenever someone asks like, “Oh, well, what's wrong?” or “What's going on?” or “What? Wait, what is IBS? What is IBD? What is celiac? What does that actually mean?”

A lot of times, our brain immediately goes to those embarrassing pieces that we don't want to share. You DO NOT have to share those things! I think it can be helpful to think about the condition in its most simple term and simple phrase so that you can share that so that other people can understand without knowing all of the details of what that looks like for you.

So one thing you can say is:

• IBS is a functional gut disorder that impacts how my body digests food.

• IBS is a condition that is influenced by stress and certain foods that I eat, and makes it really hard for me to digest food properly.

• IBS is a condition that is not very well understood at the moment, and it's something that can interfere with my daily life due to its alteration of my digestive process.

So being able to break it down into simple terms, so that you can explain what it is, and then number two, be able to help them understand your needs. So you get to set the boundaries with how much you share, right? It's your choice how much do you want to share with them. And so explain it in simple terms, and then you can go right into:

• “Because IBS impacts the way that I digest food, it's helpful for me to be able to pick the restaurant that we go to so I can check the menu ahead of time. It's important to me to avoid my trigger foods, which is you know, garlic.”

• “It's important for me to bring my own meals.”

• It's important for me to have the ability to access the restroom at any time during class.”

Whatever the actual need might be, be able to clearly explain it. With this one of you know, helping them understand your needs, this is where you Want to be pretty upfront about what you need, but you also want to be concise. And so what I'll usually recommend is that you pick the one or two things that are most important based on the person you're talking with. So if you're talking to your mom, who is, you know, helping prepare meals for you, then you might specify certain trigger foods that you have, or substitutions you would need her to make for you. If you're talking to your friends, who you go to happy hour with, it might be “I need to look at the restaurant ahead of time”, or “I'll eat ahead of time”, or “I'm not going to share with the group I have certain restrictions I need to use”. If it's a significant other that maybe wants you to do more active things together, then you might mention certain activities that work for you or do not work for you well.

Being able to tailor those needs to the person that you're talking to will help them process what you're saying and be able to add on it. In time, what you can do is add to that list if you need to, but on the front end, it's helpful to keep it short. This isn't about them, you know, being overwhelmed, and they can't possibly take on that task of helping, most people want to help, it’s just keeping it clear for them so that they can understand and take action with you. Remember how it felt whenever you were diagnosed and all the information that came your way? It was a lot and made it really hard to know what step to actually take. And so you want to keep these needs short.

So number one, explain what IBS is in simple terms. Number two, help that person understand your needs. Number three, give them a solution to help you. If you were to tell someone, “My number one need is for all of our meals to be lactose-free”, then the person that you're talking to, if they don't really know what lactose is, they might feel stuck. And so what they may do is say, “Well, I don't know if we can do that, you can bring your own meals”, and that can feel frustrating. Instead of them feeling stuck, what you can do is give them that solution so that they can easily help you out. And so what you could say is: “All my meals need to be lactose-free. Here are substitutions you can use in your recipes, lactose-free milk, these are lower lactose cheeses, these are the dairy-free alternatives that I go for.” Really being able to provide that information of ”Here is the solution to help.”

With cooking, this is very important, because this will help them be able to make those substitutions and not feel like it's so confusing. I see this a lot with garlic and onion…it's like well, how do I cope without garlic? Oh, here's how we can infuse oil and then take the garlic out. These are some alternatives that add similar flavors that we can use, being able to give them that solution is very important.

So number one, explain what IBS is in simple terms. Number two, help them understand your needs. Number three, give them a solution to help you. And number four share resources. So this may come later on this is something that you want to do when you're talking to someone and they have an interest. A lot of times that interest may have them asking you personal questions, and you're welcome to answer them. If you don't feel comfortable answering the personal questions, being able to provide resources for that person to go learn when they're feeling that desire for more information can be helpful for them to truly get it and also be able to support you well.

So this is where you might share the Monash University app if you're following the low fodmap diet and someone in your life is so interested in making substitutions for you. Maybe you share your favorite recipe developer or blogger that you would like for them to get inspiration from for recipes and meals. Maybe you share just the Monash University blog, maybe share my blog, on your favorite Instagram account, someone who is sharing credible, clear information about IBS, about your condition and about different things that would be helpful for them to understand.

This helps also take some of that pressure off of you to come to educate them completely on what's going on. So remember, you want to do this one after they've shown interest, and whenever they seem to be ready to learn more. This is really helpful for those who are closest to you, the ones that you would really love to be able to fully get it….maybe a spouse, a significant other a family member that's really intimately connected to your life, so that whenever you are, you know talking about your symptoms, maybe you're using language that you've learned, they're on the same page because they've also been in that world and they've been studying that language too.

So number one, explain what IBS is in simple terms. Number two, help them understand your needs. Number three, give them a solution to help you. Number 4 , share resources. And number five, our last step of this is to allow them to ask questions and clarify. So this is the last stage once they have shown empathy, once they have shown interest, once they have shown that they are willing to take action, they respect you, they honor you, they value what's happening in your life, and they truly care. This is where you may open the door for them to ask questions and clarify what they're learning to your personal experience. And so it might take a step by step process, everyone has their own comfort level, this is where a lot of the isolation gets broken down, because you're able to share in a safe way.

So you've already been able to educate to where they know, okay, you're not making this up, you're not exaggerating, you're not joking, like this is something that's serious. This is something that seems to be pretty complex. And so then whenever you say, okay, do you have questions for me? Is there anything I can clarify about my experience for you to be able to help me and so that's where they might ask you about the specifics of your symptoms. And you can, you know, share honestly. And what you want to do here is when you have that space, where you're able to open up the conversation is be brave and vulnerable. It’s so important that those in your life truly understand what you are going through, and so it can be helpful to break down that wall of maybe shame or that wall of well, I don't want to over complain, I don't want to seem high maintenance, break that wall down and share honestly and openly with them, so that they truly get it, because this is the place where they're solidifying everything that they've learned so far, and they're actually trying to see things from your perspective. This will help because when those moments happen, when you are in that excruciating pain that previously you tried to hide or cover up or just power through, they already have the context, and so it's easier for you to say, “Hey, I'm in a lot of pain, and it would be helpful for us to go home.” Then they're not questioning you laughing or getting frustrated, they already know because you talked about it, and so they are ready to walk out the door with you to make sure that you have the comfort that you need to feel your best.

So just a quick recap on the tips of how to talk to others about IBS:

• Explain what IBS is in simple terms.

• Help them understand your needs.

• Give them a solution to help you.

• Share resources.

• Allow them to ask questions and clarify.

This is going to be personalized to each person that you speak with based on their relationship with you and how you spend time together. You get to set the boundaries that you need based on what you're comfortable with and how they respond to the conversation. Not every person that you talk to is going to respond how you want them to, not every person is going to be supportive, so I have a few tips on what to do when they aren't supportive. And again, this is going to be individualized based on your value that you've placed in that relationship, and how much you want to try to mend it or keep it together.

So first is to communicate how it makes you feel. Remember, break down the walls, be vulnerable, be honest, and tell them exactly how it makes you feel. And don't blame or point fingers, you know, you did this wrong, that doesn't help, right, that's not a communication style that helps resolve conflict. Instead say. “Hey, when you say this, this makes me feel like this.” or “When you make a joke about my symptoms or say that you know I need to get over it or you seem frustrated, like what that makes me feel like is that my body isn't valid, or my feelings are not valid”, whatever it might be, be able to communicate how it makes you feel.

After that set the boundary. You get to set your own boundaries. And so clearly say, “Hey, you know, I understand that this is not something that you deal with, it is something that I deal with, and so my boundary here is that you won't make fun of my symptoms.” or “My boundary is whenever I say that I am an extreme pain that you believe me and that you don't get frustrated with me, because it's out of my control.” Whatever that boundary may be, you want to set it clearly.

Then you want to enforce the boundary. If you set a boundary, but you don't enforce it, sometimes that leads to like, “Oh, well you said this and then you changed your mind” or “It must not be that bad because last time you didn't care.” It's really important to make sure that you enforce the boundary, especially with those that aren't trying to respect the boundary. And then walk away when you need to. This one is hard, especially for those that are close to you, but your life is short. There's always so much in your life and you're already working hard to get the most out of your life with your condition, so this is a big piece that you want to own and be confident in, and that's walking away when you need to.

And again, you might do this as the first step when someone doesn't respect you or isn’t supportive, like maybe a date or something, but for those who are close, like your family members, this might take longer to get to, and you may choose to communicate, set the boundary, enforce the boundary multiple times before you get there, but know that it's okay to walk away when you need to if people are not being supportive for you, and aren't prioritizing you in that relationship.

So I hope that this is a helpful conversation, this is something I'm very passionate about. I've lived through this as well. I help clients through this. And I can say personally and in my experiences of my clients, being able to communicate about your IBS, being able to set those boundaries, that will bring you a level of confidence in who you are, and will also help pull you out of the isolation much quicker. You'll be surprised at how many people in your life truly want to help you and truly want to be a value add to you, they care. And so being able to talk about it gives you so much more freedom, because you have that support on your side.

If you don't have that support, know that we are here! Schedule a consult, we can talk about that and get you into a community that can support you, which is also in our community Facebook group. So what I would love to see you do today, and as always leave a review, you know, share what you took away, but I would love for you to actually go into the Facebook group called “The GUT Community”, find us and then share maybe how you've used this. Share your story, successful or maybe not, I would consider it successful even if you find those who don't support you, but share it so that we can encourage you, we can cheer you on and we can all share different stories to gain momentum to begin practicing this even more.

So I see you, I hear you, I am so, so thankful that you showed up today and that you spent this time with me! I hope you have an amazing rest of your day, and I will see you in the next episode!