EPISODE 25: Trail Trolls

STACY: Welcome to today's episode of Autoimmune Adventures. Today we're addressing something that everyone with autoimmune disease has either already faced or will face. People that we affectionately call Trail Trolls. These are the individuals who, whether intentionally or not, make our journeys harder by offering negative comments or unsolicited advice.

These trolls can range from people who question the legitimacy of our diseases to those who minimize what we go through on a daily basis. In this episode, we're going to discuss building resilience against negativity and taking control of our own story. But first, our Good Bit Minute. Have you ever shared something good that happened to you and felt a rush of happiness afterwards?

That's what researchers at Berkeley called capitalization, the act of sharing positive events with others, which has been shown to boost feelings of happiness, strengthen relationships, and now increase gratitude. A recent study found that when people share good news and receive enthusiastic responses, they not only feel more grateful, but also become closer to the person they're sharing it with.

Older adults in particular benefited from this supportive interaction, which helps reinforce positive emotions and social connections. The study also suggests that we might not share our good news enough. While people are sometimes hesitant to share, they often underestimate how rewarding it can be. So next time something great happens, take a moment to share it with someone and embrace their positive reaction.

It could enhance both your gratitude and your bond with them, creating a cycle of good vibes that just keeps on giving.

ALYSIA: Okay, so jumping right in. As Stacy said, we're going to be talking about trail trolls. What exactly is that? How do you recognize one? In the context of autoimmune disease, a trail troll is somebody who unknowingly. or knowingly says or does things that undermine our experiences.

And I am certain that you have all come across one or two or a dozen of these in your experience, but we kind of have it broken down into four common types of trail trolls. You're going to have disbelievers, just people who straight up doubt the existence. or the severity of your autoimmune disease. A close family member of mine on my in-law's side was a great example.

He just didn't believe Celiac was real. Didn't believe I needed to be gluten free, thought I was making it up, thought it was all in my head. It was just never safe to eat in his presence. That was a number of years before he started to understand. And, you know, you can try to educate, but you can only do so much.

So there's just going to be these people that straight up disbelieve that it's a thing. They're going to say, Oh, are you sure that's. bad. Are you still doing that stupid diet? Like how long are you going to do that? Sometimes those comments can be hurtful and they feel dismissive of the struggles that we're facing.

I feel like over time I've gotten a thicker skin. I don't know about you ladies, but those things don't bother me because I know what I'm going through. I know what's true for me. I do my best to kindly educate those who are open enough to hear what I can share with them.

STACY: I think that we forget one very important thing, which is nothing, no relationship, no person has the right to tell us that we don't have a real problem when we know we do.

I have to be happy and go and live my life. And I prefer to do it without being in excruciating pain. You can try to kindly educate, but if they will not be educated, you need to just disengage, move on.

ALYSIA: I would agree with that.

BECKY: And be aware, we have mentioned before that sometimes we just have to give people in a sense, the grace of recognizing that some people really struggle to understand or believe things outside their own experience.

The example that I always think of ironically, because I have lupus, but when I was in college, one of my good friends...we were all gonna, a bunch of us were gonna go hiking together. Stacey was there as well. This friend of ours that had lupus said, "I'm sorry guys, it's too sunny and that's too far. I really just can't go out that day."

I knew nothing really about lupus. I knew very little about it. I kind of thought she was faking it. I thought she was not wanting to go hiking with us. That it was just her excuse and her way of trying to get out of hiking. I didn't think it was a real thing, which ironically. has come back to me so many times now that I have lupus and I know what it's like to not be able to be in the sun.

And so sometimes, like Alysia and Stacy mentioned, a lot of people just don't understand things out of their own personal experience.

ALYSIA: Absolutely true. And I feel like as we're discussing this, I know for a fact I've been every one of these kind of trail trolls in my life and it, it eats at my conscience that I have to forgive myself for being my past self, not being compassionate and not being open to learning.

But when you know better, you do better. You're going to have the disbelievers and you're going to have those that we call them the minimizers. Those are going to be the people that downplay your condition often by comparing it to their own minor ailments or suggest that you're maybe overreacting. They say things like, "Oh, everyone gets tired," or "I feel that way sometimes too, and I'm fine." And it really invalidates what you're going through.

I think the minimizers are the ones that I struggle with the most, because I am like, "You don't know...you don't know what's happening in my body You don't know how I feel." And I think that I sometimes try to minimize my own symptoms Do you guys find yourself doing that and doesn't it doesn't it backfire on you?

STACY: For instance, we had snow recently and I went out and I completely uncovered the car and it took 40 minutes to do and when I got done, I felt amazing. And then two hours later, I felt like I'd been hit by a truck, and I just minimized what I was doing to myself. I should have known to take a break. I knew to take a break, but I thought, "Oh no, I'm doing fine. I'm doing fine." And I just kept minimizing the fact that my body was kind of giving me those quiet, subtle clues that I needed to slow it down, take a break. But I ignored all those things and I paid for it.

ALYSIA: Yeah, that's definitely something that I struggle with as well. Then you're going to have the comparison trolls, right? These are going to be the people that even if they do have the same disease as you, you really shouldn't let their opinions and advice get in the way of your own well being and your own experience. So not everyone's experiencing that disease in the same way that you are, and you need to advocate for your version of the disease and your experience of living with it and live the life that's best for you.

As Becky said, we really need to give people grace because I am definitely guilty of this. And I don't mean to be comparing, but when I'm sharing information back and forth with somebody I know that has celiac disease or has Hashimoto's disease, I often find myself saying, "Oh, you know, you really should make sure you're taking this supplement or have you tried doing this?" And sometimes it really is just a friendly exchange of information, but I have to watch myself that I don't, um, do this comparison thing because that is, it's not cool.

BECKY: And guys, I was going to say, we do not need to be our own comparison troll. And I say this because I actually have a couple of friends who have lupus.

One of them is a very dear friend who is probably about 10 or 15 years older than me. She travels the world and not that she doesn't have problems with her lupus, but she does stuff that I can't even imagine doing it in 10 or 15 years because there's no way I could physically do it now. I had to accept that her version of the disease is different than my version.

Doesn't mean she doesn't have bad days. Doesn't mean she doesn't struggle. She never tries to minimize or compare mine in a way. Like, hey, I can do this. Why can't you do this? I'm the one who does that in my own mind. So don't be your own comparison troll either.

ALYSIA: The last one we want to talk about really quick is those that are giving unsolicited advice. This is probably the most common for me. In my experience, this is the most common kind of trail troll I come across. You know, those type of people that they want to offer their quote unquote 'expert advice' about your treatment or your lifestyle choices or your diet. And despite having no knowledge of your specific condition and your specific needs.

And it often comes across as helpful, but it can be incredibly frustrating for us when it is not asked for. I definitely had this experience with a longtime friend who she is, has always been super fit. She was a college athlete and has her own coaching business, and she is just super, super in shape. And I was trying to explain to her this, the spoon theory and how that is a good analogy for what it's like living with autoimmune disease.

And she would not accept it. "That's BS. Your spoons don't exist. You actually have infinite spoons and you just don't know it." And I was like...

STACY: Oh my goodness.

ALYSIA: She's like, "It's all in your head. You're limiting yourself." And I'm like, "Girl, I don't think you understand the shutdown that happens to my body, the literal shutdown of my brain and my physical body." To somebody who has never had health problems to somebody who has never had that experience, and who is big into doing the psychological work to be healthy, as well as the physical work, which I appreciate completely, it was a totally foreign concept for her. And she would simply not accept it. That was hard. That was a hard conversation.

STACY: I think what a lot of people don't understand is that when you're really fit and you don't have autoimmunity, it's like you are a Fiat running on a school bus gas tank, but I'm a Fiat running off a motorcycle gas tank over here.

ALYSIA: No, you're a school bus...

STACY: Running off a motorcycle tank. What, what people don't understand is it isn't about ability. It's about capacity. I don't have the capacity to run my school bus off of a motorcycle tank as long as you have to run your Fiat off of a school bus tank. I don't have that in me. Without that capacity, it's not a fair comparison.

People who are really healthy and don't have these challenges don't understand. And believe me, as someone who has been in a place of health and a place of wellness, and I could run all day long and get to the end of the day and be like, "Oh, what a wonderful day," and sleep and wake up in the morning and feel refreshed and ready to do it all over again. And I don't have that anymore. My capacity has been reduced and that doesn't mean I can't have a good life. It just means I have to be very careful.

ALYSIA: And I think that's why we have mentioned, we really do have to give these people grace. This is not their experience. They do not understand. And you can't understand until you've experienced it for yourself.

I don't think there's a way for us to accurately describe our experience that would help another person understand it to the degree that they would go, "Oh, oh, okay, okay," just got to experience it yourself.

BECKY: Well, and I think if all of us can think back to when we were healthy, we wouldn't have understood it, obviously on the level we do now. I mean, we all grew up in a home where our parents both had autoimmune problems. So we had kind of an inkling. But there are days where I look now as I'm struggling with my own autoimmunity that I think, Oh my word, my mom was a rock star! I have no idea how she survived doing some of the things that she did with five kids with all of her autoimmune problems.

Or even our father, with his autoimmune problems and his health problems, being the breadwinner and being out to work and doing all the things that he did. I mean, it is incredible to me sometimes.

We'll take a minute now, we're gonna look at the psychology behind trolling behavior. Because a lot of the time, trolling behavior stems from just ignorance or a lack of understanding, because some people actually genuinely want to help, and their approach is just maybe a little bit misguided. Sometimes people feel threatened by what they don't understand or become defensive with something outside their own experience, and the good old, if 'I haven't learned about it before, or if I haven't experienced myself, it can't be real' crowd because there's a lot of people in that group.

So recognize that not everyone who says, "You don't look sick," is a troll. Some people are honestly trying to say it as a nice thing, even they don't realize that sometimes that can feel hurtful or dismissive. It's almost them trying to cheer you up like, hey, I know you have this chronic disease, but you don't look sick. You look great! Keep that in mind when we're talking about giving people grace. Some people just aren't educated about autoimmune diseases.

So try to look at each situation as you face it. Like we've said, if it's better to try and help educate the person or to just let the comment go. When they talk about water off a duck's back, that's where it's gotta be. If you get hurt about every comment that somebody makes to you about your autoimmune disease, you are going to go around feeling like garbage all the time mentally and emotionally. You can't do that to yourself. You have to learn to let some of it go. Recognize that some of the things that people struggle with are constructive criticism versus harmful comments.

And there is definitely a difference between someone offering feedback that's genuinely helpful, and somebody making an unkind remark that minimizes your experience, and recognizing the difference can help you again, respond in a more appropriate way.

STACY: All right. So I guess what we need to ask ourselves then is how do we handle these trail trolls and the negativity that comes with them?

So let's talk about some possible coping mechanisms that we can have that will help us to build some resilience. We already mentioned this a little bit, but it's really important to develop a thick skin. We cannot let the things that other people say about us determine our self worth and our care for ourselves.

So we need to build up a little bit of resilience to the negativity. And it doesn't mean that we ignore our emotions. We just need to let go of the comments that don't serve us. And I know that can be hard and it's okay to feel upset for a minute, but then take a deep breath and remind yourself You know, it's okay. They're not me. They don't understand what I'm going through. Most people are not trying to be evil. If you're spending time with people who are trying to be evil to you, you need to get a new crowd. Most of the people in your life, they do care about you. They may not understand, but they're not trying to be horrible.

But as you learn to brush off these comments, it's gonna be a lot more helpful to you. I remember someone telling me once, "You can give me all the advice you want, but when you walk away, I'm going to turn around, and do what's best for me." And it's the same thing with these kind of comments. You can make whatever it is...your observations can be there. You can say whatever you need to say. I'm going to turn around and do what's best for me, because it's my life, and I actually do know what I need to be happy. One of the ways that we can avoid the problem entirely is to just set boundaries, and we need to learn to communicate effectively.

"I really appreciate your concern, but I'm working with my health care team on this." Because rarely are you ever going to get someone who's like, "But I've got a better plan than your doctor." If someone repeatedly disregards your boundaries, it crosses into troll territory, and that's when you can assert yourself more firmly. You need to protect your space, because it's essential for your well being.

ALYSIA: You have to be aware that oftentimes these people that you have to set boundaries with are some of your closest loved ones. And that is really hard to do. It can be a spouse, it can be a parent, it can be a sibling, it can be a coworker, it can be a dear friend, whoever, but it's oftentimes.

It's not going to just be Joe from the grocery store. You know what I mean? It is going to be somebody who is important in your life. "Clear is kind." Have you heard 'clear is kind'? Be clear with them. "I love you so much. And I know you have things to share with me about this, but I'm going to tell you right now that I need you to stop talking to me about my health and my autoimmune issues. This is something I'm working on. I love you. I do not need your input here. And in fact, I'm asking you to stop giving it, because it's not helping me." And that might seem harsh, that might sound harsh, but creating those firm boundaries is going to protect you and is going to protect your relationship as well.

STACY: Because we can either do it in a moment of calm where we set those boundaries and we do it in a place of calm and peace, or we can do it when they have finally picked on us enough that we blow a fuse or we say something we really regret. So it's about approaching it in a place of calm and setting those boundaries in a place of calm.

And it also helps if we create an awareness about autoimmune disease with the people that we care about, because a lot of the reason that trolls exist is they haven't educated themselves. We have spent years educating ourselves. People who have been ill for years have spent years educating themselves on how to feel better.

So it's a little bit ridiculous for someone who knows nothing about a disease to come and tell you how to fix it. I'm telling you, if I have one more person tell me that yoga will cure my autoimmunity.

BECKY: We all enjoy yoga when we can handle it.

STACY: When I tell someone I do yoga, I still have lupus. They don't really know what to do with that.

"Well, if you meditate..."

"I do meditate every single day, but it isn't going to cure my lupus."

So, it's about creating an awareness that it isn't something that is a choice that we have. We cannot tell our autoimmune system to chill out. We can do things that help it to calm down a little, but we can't stop ourselves from having autoimmune disease.

ALYSIA: And I think it's good to be able to feel confident to, to speak up. This is part of advocating for yourself and it's not just for yourself, it's for all of us with autoimmunity. When you share knowledge in a kind and thoughtful way, it is advocating for anyone who is suffering. I mean, I remember a friend who was saying, "Oh, you need to just go keto."

And I have all these recipes and she sends me all these recipes. And every single one of them is cream cheese and sour cream and all this dairy. And I'm like, "You know, I really appreciate this, but I can't do all this dairy."

"Well, it's good for you. Well, no, it's good for you, sweetheart, but it's really not good for me. My body doesn't tolerate it. It causes inflammation and leaps and bounds for me. So I'm so happy that this works for you. For me, it's actually harmful."

You know, you often aren't going to be able to get into the scientific explanation of it and people don't want to hear the scientific explanation of it.

You can create little, uh, basically a little elevator speech for certain things and just give it, just rattle it off quick and be like, "Oh, thank you, but..." or, you know, those that are like, "You just need to get out in nature more."

"Well, actually the sun is harmful to me, so I have to be very careful about how I get out in nature.

There's going to be a lot of those conversations as you navigate. So just be prepared. You don't have to be mean. You don't have to be a jerk about it. There, when we say trolls, we're not meaning jerks. These are people that are actually just trying to be helpful most of the time.

STACY: One of the best times that you can educate someone lovingly is when they say something like, "Well, don't you think that you would feel better if you did yoga?"

And then you explain, "Well, you know, I do yoga," or you can even say, "I like yoga, but do you know what I've really discovered is helpful to me?" And then you tell them. So it's like replacing what they're telling you to do with what actually works for you and then showing them. And it brings me health. It brings me joy. It brings me comfort, whatever the case may be. Someone who cares about you isn't going to shut. that down.

BECKY: And a lot of times when people hear you have immune problems, they're like, "You should eat more garlic." Especially if you have lupus, garlic is one of the worst things you can do. You know, go look at the Mayo Clinic, go look at, you know, John Hopkins, whatever.

They tell you, you're not supposed to eat garlic and they tell you you're not supposed to use echinacea. And I said, "And ironically, the reasons it's so good for the ordinary people that don't have autoimmune diseases are the reason it's not good for us to do, because our immune system's already hyped up. We don't need any help kicking it in as it were."

And that has actually been a conversation I've had several times, but I would say almost every time I've had it, people are just like, "Oh, I didn't realize that." And it is actually something that helps educate one person. It helps not just you when you're having conversations with them later, but like everybody they come into contact with that has autoimmune disease.

STACY: And really, the beauty is simply this, if they want to know, they'll listen, and if they don't want to engage, it is okay. If you're not sensing that they want to learn, it's okay to just disengage and move on, right? "Well, thank you for that information. Let me tell you what I'm doing on Wednesday." Switch the subject if it's not something where you can get away from the situation or "Well, you know, it was lovely talking to you. I'll see you next time and then head out. " Do not sit and let someone berate you if they're not interested in hearing what you Have to say just try not to take it personally.

ALYSIA: It's usually not personal. I believe most people don't mean to be dismissive or ignorant or rude I don't think that's the way most people are, so just get a thick skin. Seriously, just get a thick skin.

While you're doing that, you've got those difficult people in your life. You're going to need supportive people in your life. We've talked about the importance of having a community, of finding your people, having a good support system, and you can find those online. If you cannot find them in real life, quote unquote, you need to lean into those relationships that feed you, that validate you, that support you, that uplift you, that aren't going to dismiss your struggles.

Be very careful to not fall in with those that are constantly bemoaning the disease, that are constantly bemoaning the struggles. That is a really easy way to get dragged down in the negativity of what we live with. And sometimes those supportive communities can turn in that direction. So try to find those ones that are more positive.

Try to find the ones that have more of an uplifting vibe and then obviously have a good sense of humor and a good attitude. That's our number one in our top six is having a good attitude, having a sense of humor so that you can cope. It really is a coping mechanism. It's a great tool for diffusing negative situations and sometimes laughing at yourself or making a light hearted comment in response to something that somebody says can really take away the sting of their words. And it can also kind of give them a gentle reprimand. One of the common comebacks I have used when I am eating with people and they are saying, "Oh, a little bit of gluten can't hurt you, right? You know, you can have a little bit can't you?"

I say, "Well, I want a little bit of gluten like you want a little bit of food poisoning." I laugh, they laugh, and then I'm like, but for real, when they realize that that's just the gastrointestinal reaction, you know, when they realize that you are taking this seriously and, and you say it in a lighthearted way like that, they will probably start taking it more seriously as well.

It's not about making light of your condition. It's more about having perspective. And not letting the negativity take hold. So, we do have to be careful not to let that pendulum swing too far. Like, you're gonna have people, "Oh, you don't look sick." And you're gonna wanna say, "Well, yeah, you don't look like an idiot, but here we are." And, that's not helpful. It's more about diffusing the situation, And not making that other person defensive.

I have very, very rarely had to be pointedly rude to somebody who was being rude back to me, because I think it's almost an art form of diffusing situations and diffusing negative comments. And I haven't ever really had to get really ugly like that, but, but I have. Not proud of it, but it was a form of protecting myself, and so I can't really apologize for it.

We want to enforce kindness is best. Sometimes it's not possible. I would say rarely it's not possible. It usually is, but if they won't drop it, feel free to use that above line. And only in moments of desperation, do we really engage with a true troll.

BECKY: But then what happens if in spite of all of our best efforts, we're talking about getting a thick skin, but sometimes words honestly do hurt. And sometimes we little. little of the ugly inside. The random comment of you look fine could turn to us feeling like we're gaslighting ourselves. Am I exaggerating my fatigue? Maybe, you know, maybe I am okay. And maybe I could do this if I just tried harder. Unfortunately, it's very true that we can be our own worst critics and negative self talk can be just as harmful as the comments that we're getting from other people.

It's important that we address these kinds of things head on and deal with them. And we need to first identify our negative thought patterns. We need to recognize when we're engaging in negative self talk. It can be challenging to know when we're actually hitting our limits versus when we're trying to avoid things maybe that we don't want to do, and it takes practice to say, am I really hitting my limit here? And guys, I will tell you right now, I have learned one of the things that's hardest for me is I can't go until I hit my limit. I have to kind of gauge what my limit is going to be, and I have to quit before. Cause if I go till I hit my limit, it usually puts me in a flare or have a really hard couple of days afterwards.

And it takes practice. practice. Nobody's perfect at this right away. Give yourself some time, practice until you can kind of recognize, is this me just trying to get out of something that I don't want to do? Am I talking myself out of this? Or is this something that I can really handle? Where's my line? Where's my boundary?

STACY: I think it's important that we learn to challenge our self limiting beliefs. So, Like Becky was saying, once we, you know, identify negative thoughts and we challenge them, we have to kind of do a little mini therapy session with ourselves where we ask, is this belief true? Or am I just being hard on myself?

And by asking those questions, we can then reframe our thoughts into something that's more empowering. Let me give you an example. Instead of thinking, "I can't do anything because I'm sick." You could say "I'm managing my condition and I'm doing the best I can with what I have." One of my favorite poets is Andrea Gibson, and she is going through cancer.

In one of her recent newsletters, she talks about going to yoga class as a young woman suffering with Lyme disease, and the yoga instructor, because she couldn't see Andrea's disease, she kept telling her that she couldn't have a strong mind unless she had a strong body. And then she explained what she wanted to say, but was too embarrassed to say to the yoga instructor.

So instead of saying anything, she just laid there quietly. What she thought about later in the evening, as she was at home and actually had the time to kind of gather her thoughts was, "Strength is choosing to show up to something hard, knowing others won't see the massive effort it took to get there. Strength is the courage to rest when your body demands it."

And I think. That we have to remind ourselves that that's where the strength is. The strength is ignoring what everyone else is saying and doing what our body and our mind is telling us is best for us, and that takes a lot of strength and a lot of fortitude because "There isn't a healthy body in the world stronger than a sick person spirit."

And I agree with you, Andrea. Thank you for that. She really inspires me and we'll include a link to her newsletter if you're interested in reading the whole story. We also need to build some self compassion and self worth. Lastly, if we practice this self compassion, then we're gonna Know that we're worthy of the care and respecting kindness that we hopefully are giving to others. We should be returning that to ourselves.

And it's okay to have bad days and it's okay to acknowledge that living with an autoimmune disease is really hard, but we need to embrace the strength that takes to keep going and we need to be kind to ourselves and we need to be proud of ourselves on those days where we are able to accomplish things that maybe we were worried that we weren't going to be able to. And sometimes that means we got up and we showered and made breakfast. before we had to lay back down. But when we're trying any day that we're trying and we're practicing self compassion and self worth, that positivity that we feed to ourselves will allow us to be okay in the space that we are in on any given day.

ALYSIA: Thank you for joining us. As we've talked about trail trolls today, we know that dealing with them can sometimes be difficult and the negativity that they bring into our lives isn't always easy to process, but we want to remind you that it is crucial to prioritize your well being, and that setting boundaries, building resilience, practicing self compassion, those are the things that are going to help you navigate these challenges of living with autoimmune disease more effectively. So don't let the trolls, whether they are external or internal, diminish your strength, because we are here to tell you that with support, education, a little bit of humor, good attitude, you can find the power to rise above that negativity.

So drop in and visit us at autoimmuneadventures. com, like, and subscribe, and please leave comments and suggestions about what you'd like to see in future podcasts.

Remember that you are worthy of joy. Your disease does not define your life, you do.

HELPFUL LINKS:

Sharing good news increases gratitude and improves relationships: https://greatergood.berkeley.edu/article/item/why_we_should_share_our_good_news_not_just_our_struggles

Andrea Gibson article about true strength: https://substack.com/@andreagibson