EPISODE 32: Support Systems

STACY : Welcome everyone to today's episode of Autoimmune Adventures. If you've ever felt alone in your health journey, if you've ever wondered, does anyone really understand what I'm going through, this episode is for you. We're diving deep into the power of support groups, why they matter, how to find the right one, and even how to create your own tribe, if you can't find a good fit.

But first, a Good Bit Minute. Recent advancements in immunotherapy have shown promising results for individuals with autoimmune disease. A study published in Nature detailed how three patients with severe autoimmune conditions achieved remission after receiving bioengineered and CRISPR modified immune cells.

This innovative approach offers hope for more effective treatments in the future. Additionally, the Autoimmune Association has partnered with the U. S. Olympic swimmer Paige Madden to raise awareness for autoimmune diseases. This collaboration aims to shed light on these conditions and inspire those affected to seek support and treatment.

If you're interested in reading more about either of these things, we will give you the links on our show notes. These developments highlight the progress being made in both treatment and awareness of autoimmune disease, offering hope and inspiration to many. So first, I would like to share a little bit about my own experience.

When I was first diagnosed, I really felt completely overwhelmed. I wasn't quite sure what was happening to me. Doctors gave me medical advice, but I didn't have anyone to talk to about my daily struggles. About the exhaustion, the brain fog, the emotional toll of feeling like my own body was fighting against me.

Now, keep in mind, I'm the oldest of the three of us, so I got some diagnoses before either of my sisters did. Now, I've got plenty of support. But when I was first starting out my autoimmune journey, there weren't a lot of people who understood what I was going through. So, I tried talking to friends, and I talked to family, and my mom had some input for me, which I greatly appreciated.

But honestly, if someone hasn't been through what you're going through, it's really hard for them to get it. And then I found a support group online. At first, I just read other people's posts. I didn't even introduce myself. But seeing others describe exactly what I was feeling was really life changing for me.

And it was like someone had taken my thoughts and put them into words. Eventually, I started engaging, sharing my own experiences, and suddenly I wasn't alone anymore. So today, we're going to break down why these communities are so important and how to find one that truly lifts you up.

BECKY: So let's start with the emotional and mental health benefits. One of the biggest struggles of living with an autoimmune condition is a sense of isolation. And I think it's interesting because even though, like we said, as sisters, we have a lot of that community together, but I think the nature of our diseases, sometimes you just have that feeling of isolation. And especially, you know, Stacy got her lupus diagnosis before either of us really had anything going on.

Celiac, even though, like, I was the first to get that one, Celiac weirdly wasn't, I think, as big of a deal, maybe, for us, because we had seen it with our dad, and it was just, just sort of felt run of the mill, almost, like, it wasn't fun, but it was a little easier to live with, because, again, we had experienced it.

I'm sure for people who have not had that experience of somebody, of a family or friend having it, even something like Celiac would be really hard to get used to and hard to manage alone. So there's something about these diseases that often just leaves you with that feeling of isolation.

So you're not just feeling physically unwell. You're also feeling emotionally alone and you're feeling emotionally unwell. Nobody understands you and it can take a real toll on your mental health. In support groups, you have a community of people who understand your reality and you don't have to explain why you're exhausted after you've even had like 10 hours of sleep or you haven't done much.

I mean, one of the ones that's often discussed in the groups that I'm part of is how exhausting it can be for some of us just doing things like taking a shower in the morning. You don't have to justify why you cancel plans at the last minute. I've been doing this for years and I still feel awful when I have to cancel plans, or when I can't be there for people.

The exception to that is people who really understand my disease because they get it and I know they're not offended or their feelings aren't hurt. They understand. And so this is where finding your tribe is so helpful. When you go to these groups, you're in a space where people just get that and beyond the emotional support, there's also practical benefits. People can give you advice on treatments, good doctors, lifestyle changes that can help you feel better. There are amazing ways to learn.

I know one of the groups that I'm a part of is called My Lupus Team. And it is uncanny to me how often I've been having just weird little things with my lupus, questions I have or things that pop up and then, boom, it will show up in the feed and they'll have an article about, "Hey, a lot of people have been talking about this. This is a problem." I think because we're all in so many situations where we get gaslighted so often people, whether it's doctors or people around us that try to convince us, "It's not that bad. You're not sick all the time." We get gaslit in so many ways. It's really easy to become, in a sense, gaslighting ourselves, and so it's very validating, even the things that you don't voice, being able to find that people are having those same experiences.

There's the motivation factor. When you're surrounded by people who are actively working on their health, it inspires you to do the same. It's easy to feel discouraged when you're struggling with a chronic illness. When you see others push through and thrive and they cheer you on when you're pushing through and trying to do it. It reminds you that while the journey is tough, you're not walking it alone. And it is hugely beneficial.

ALYSIA: So now that we know how powerful support groups can be, the next big question is, how do you find the right one?

And there are two main options, online groups and in person meetups. So online support groups are great because they're accessible to everybody, no matter where you live, Facebook groups, Reddit communities. and condition specific forums, that connect you with thousands of people who share your experience.

The downside is that some online groups can be overwhelming, and without moderation they can sometimes spiral into negativity, which we'll talk about a little bit more in the next section. But on the other hand, in person support groups offer something that online spaces can't. They offer that face-to face connection.

Hospitals, wellness centers, even local coffee shops will host support group meetings, and they can be incredibly powerful because there's something special about being in the same room as people who truly understand you. It's trauma bonding. So when you're looking for a support group, here are a few signs that you have found a good one.

The conversations should be uplifting and solution focused. There's a strong moderation system in place to keep discussions respectful. There is going to be a mix of experienced members and newcomers. So that kind of helps create a balanced perspective on things. And if you're new to support groups, don't feel the pressure to jump in right away.

It's okay to just sit and read and observe at first and take your time and see if the group aligns with your needs, and engage when you feel comfortable engaging.

STACY: Now, we need to remember that not all support groups are helpful. Some can actually make things worse. One of the biggest red flags is 'misery loves company' culture.

Now we have talked a lot about this in prior episodes, the importance of cultivating a thought process that is filled with positivity and forward momentum. So if you get into a group that's constantly complaining, doesn't have a focus, doesn't care about thinking about solutions, doesn't discuss support, then instead of helping you, it's going to drain you.

It's not going to lift you up and give you what you need. We have to sometimes get all that pain and sorrow off our chest. But then once we do that, the group is supposed to step in and help. But if the group comes in with all the negativity all the time, it's just going to make things feel worse instead of better.

And then there's not going to be any forward momentum.

BECKY: Exactly. One of the groups I'm in, there's plenty of venting because we all have days where we feel like garbage, where we can't do things that we used to be able to do. And so people will vent that, but it becomes positive because without a doubt, every time I look in the comments, it's, "Hey, you can do this. We're all behind you. We care about you." It's all. uplifting and people, like she said, are giving solutions on, "Could you try this?," "This is something that's helped me when I have fatigue," or whatever it is and that is the difference i think there's a difference between misery loves company and somebody telling you you know ... if you put on there all these horrible things that have happened to you and how you're feeling, sometimes it's nice to have somebody say, "Do you know what? That is absolute crap. I am so sorry that you're going through that." But then from there, it should turn into, "I'm wishing better things for you," or "Here's some things that might help." The idea is that after the venting, there's something positive happening. That's what you want to be looking for.

ALYSIA: I mean, just the word support in support group. Think about what support really is. It's lifting you up. It's giving you strength where you need it, or you don't have it for yourself. And sometimes that negativity does the opposite. So, yes, venting is important. And being validated for the difficult experiences you're going through is important, I believe, but the tone. of the group really makes a difference. And if you don't have that positive forward momentum solution based tone in that group, it does tend to drag you down, at least in my experience. And you know what? You can be that positive. You can set a positive tone. You can be the positive. Most people, they make posts when they're having a bad day, there's not a lot of posts from people that are saying, "You know what? Here's a win. This is my win. I started a new supplement. It's had a huge impact on me. I feel great." Or "I cut this out of my diet. It's making me feel wonderful." Or, "Hey, just had a great day. I was able to have enough power in my power bar to do A, B, and C today."

You know, those kind of posts I love seeing. I love it. You can be the cheerleader and don't just post negative stuff. Post the positive stuff too, because it's there.

STACY: I agree. So if we can remain positive, that's great. But if it's negative, that's a red flag. Another red flag that we might come across is unverified medical advice.

I need to remind you that most of the people on these forums are not medical professionals. And there is a really fine line between sharing personal experiences, like saying, "This magnesium supplement I take is fantastic. You might want to try it." That leaves it up to you to try it or not try it, versus pushing dangerous misinformation.

If a group discourages medical treatment, if they promote extreme diets, or they insist that a certain supplement will cure absolutely everything, that's a warning sign and you need to beware. And then lastly, you need to watch out for judgmental or toxic behavior. If a group shames people for the choices that they've made, whether it's taking medication, or not trying a specific diet, or making a different lifestyle choice than they might have made, it's also not a supportive space.

You need to remember that your mental health matters as much as your physical health. And if a group is causing more stress than relief, step away. It's okay to step away.

BECKY: So If you need to step away or you're not finding a group that fits your needs, what do you do about that? Have you ever considered maybe building your own tribe and you start it?

Starting a local meetup or an online community can sound maybe a little intimidating, but it doesn't have to be. It can be as simple as creating a small private Facebook group or reaching out to a few people that you've connected with in other groups and forming your own little circle. There's a lot of things like meetups, start your own little Facebook groups.

And people who are looking for that, if you say, Hey, this is what this group is about, people that are looking for that are going to come into Facebook or Instagram or all these other different social medias and find something that is a fit for them. So, don't be afraid to take that step and maybe you'd be the one to create the tribe that you know is going to be good for you.

ALYSIA: All right. So let's wrap this up with some key takeaways. First, you deserve a community that lifts you up. If you're feeling alone in your health journey, know that support really is out there. But you have to find it. Second is going to be take action. Do it this week. Join a support group or re-evaluate the ones that you are in.

If something isn't serving you, it is okay to let it go and walk away and find something that is going to work better for you. And third, share your experience. That's part of being in a support group is sharing your experience. Have you found a support group that changed your life? Do you have tips for finding the right tribe?

Let us know. We want to know that stuff. And we'll leave you with this quote from Oprah Winfrey, "Surround yourself with only people who are going to lift you higher."

Thank you for joining us today. Don't forget to subscribe and share this episode with anyone who might benefit. Visit us at autoimmuneadventures.com.

And remember you are worthy of joy. Your disease does not define your life. You do.