Community In IBD: How to Stop Being Isolated Featuring Aaron Blocker

Community can help people with IBD access disease information and feel less alone. Amber talks with Aaron Blocker about the importance of finding and creating community for those living with IBD. They explore how online groups provide support and counter misinformation, while also discussing the importance of being cautious when sharing personal experiences online. They emphasize the importance of authenticity, learning from mistakes, and prioritizing the well-being of others.

Transcript

[MUSIC: Digest This Beat]

Amber Tresca 00:00:05 I’m Amber and this is about IBD. I was diagnosed with ulcerative colitis as a teen and had pouch surgery ten years later. Today I help people with Crohn’s disease and ulcerative colitis understand their disease and feel seen. About IBD is real talk on symptoms, treatment and life with IBD straight from patients, caregivers and experts. You’ll learn, feel less alone and have a laugh along the way. This episode is sponsored by Connecting to Cure. Connecting to cure is a nonprofit whose mission is to accelerate research, amplify awareness of Crohn’s disease and ulcerative colitis, and connect and support the inflammatory bowel disease community. You can find them at Connecting to Cure. And I am so grateful for their support.

Aaron Blacker is the senior director of government affairs, policy and patient access for the National Bleeding Disorders Foundation. He earned a master of science from Mississippi College in the Department of Biological Sciences. Aaron lives with Crohn’s disease and an ultra rare condition called hypo phosphatase. As a way to meet others and provide support to those living with IBD.

Amber Tresca 00:01:23 He created a Facebook page called Support Pearls Disease and Ulcerative Colitis in 2010. Aaron, welcome to About IBD.

Aaron Blocker 00:01:34 Thank you for having me. I’m excited to be back and to talk to you.

Amber Tresca 00:01:38 Yeah. Thanks. Yeah. This is your second appearance.

Amber Tresca 00:01:41 On about IBD. Believe it or not. We talked about your disease journey on episode 89. So we are almost 100 episodes. Later talking again. And I encourage people to go back and hit the archives up and listen to that episode as well. But so this is the sequel, but I don’t think you need to hear the first version to understand the sequel, but I still will encourage people to do that because our topic today is community and how to either find it or create it. So we have to start because you created your own community. You created a Facebook group called Support Crohn’s Disease and Ulcerative Colitis. I think probably most people listening to this are already in it, but if you’re not, we can put a link so that you can join.

Amber Tresca 00:02:31 So can you tell me the story, Aaron, of how you decided to start this group?

Aaron Blocker 00:02:36 Yeah. So I it was right after my diagnosis, like I was I was diagnosed at the end of 2009 and with Crohn’s disease. And then, it was probably things like May of 2010 when I just kind of decided to start a Facebook page. And that was really kind of around the time that Facebook pages were kicking off, which is crazy to think that it’s been that long. But the main reason was that, like I was I was 17 when I was diagnosed and I just started college and all of this stuff, and I, I didn’t really know anybody with Crohn’s disease or ulcer colitis. And honestly, it barely knew much about the disease myself, even though I was just diagnosed with it. And I wanted to really just try to meet others with this disease. And I think that, you know, part of that is you want I mean, it’s so good to hear from people who have the same disease or similar disease as you, especially people who’ve been living with it longer than you, just to kind of know what they’ve gone through and to get an idea, an idea of what I may experience, what I may not experience.

Aaron Blocker 00:03:42 And we all know that everybody’s journey is different with with IBD, it can be completely different for one person to the next. However, there are a lot of things that are very similar and and it’s nice to hear from others. And so I just kind of honestly, on a whim, as an 18 year old, decided to just create a Facebook page and, and see if people would, would join and be able to talk to me and hopefully others about this disease. And so that’s what I did. And I didn’t know what I was doing. Again, I was just 18 years old. And this all of this was was new. Facebook had been around for a little bit, but pages were very new. And I just came up with a name just randomly and, and did it. And it’s it’s been one of the coolest things I’ve actually ever done. Now here, it’s what, 15 years later at this point, which is crazy. And so it’s become a decent size community and, and been really good for me.

Aaron Blocker 00:04:39 I met a lot of people with IBD through it. And so yeah, it was just kind of something I did on a whim to, to meet others. That’s really kind of evolved into this kind of community for even for me, I still get support from it. And but for others to kind of come to you and just talk about living with IBD.

Amber Tresca 00:04:57 It’s so funny. I mean, I started this podcast on a whim, so it’s and it’s like, you just never know what are the things that are going to that are going to stick and stay around for a long time and creating community like you did. It was on a whim, but you really you really needed it at the, you know, at the time. And still, you know, I would say when I had my surgeries and I had already been diagnosed for about ten years when I had my surgeries. But that was the time when I finally felt like I needed community. And so I went looking for some and found some.

Amber Tresca 00:05:30 And so I think people come to it for different reasons. So my reason for finding community was because I realized that I didn’t understand anything. Right. which sounds wild to say, but I didn’t. So why is community important to you?

Aaron Blocker 00:05:46 I mean, I think that again, it goes back to to being surrounded by people who go through a similar experience to you is just really powerful. And so I think there are a lot of people that don’t have, that don’t have or may not have the support around them in their life that they feel like they need. And sometimes I think patients with IBD, they, they, I honestly and me to some have I felt like a burden on others in my life. People who are, you know, within, you know, my close family and friends. And so I think when you find a community of people who are going through something similar, you all can relate and talk about it freely and just kind of be your yourself in that way. And people understand and and are not.

Aaron Blocker 00:06:30 I’m not going to say people are completely non-judgmental in the community, but like for the most part, you know, you’re going to find people who just want to listen to what you’re going through and support you and and get feedback from each other again, and to be able to just ask questions. It’s very different talking to somebody who’s in a similar boat or in the same shoes as you are to get that back. And so having that community is just really helpful and really powerful because you feel like you can ask things that you can’t just ask normal people. And again, we all know IBD is not the most pleasant disease to talk about. And, you know, to talk about diarrhea and things like that with your close friends, which I have now. I mean, all my friends know, you know, they’ve heard all the stories. But again, it can be very challenging to have that open and honest conversation with, with some people. And so to be able to just go to a community and talk about things, about the knowledge of the vomiting, diarrhea, the blood loss, the surgeries, the appointments, the frustrations, the stress, all of that that comes with living with the IBD.

Aaron Blocker 00:07:28 And to just have people that understand it is really powerful and something that helps me and again, to to have people to to talk about, like what? And especially like when you’re starting a new medicine and things like that. That’s also really, really something that is helpful to, to just ask like what people experience. And, and again, you have to kind of take it with a grain of salt. Some of it in terms of medicines and treatments, because it’s going to work differently for everybody. But still, to be able to ask a question and some of the basics is, is really helpful. And I think that’s where having a community can come in and just help you to, to manage and deal with everything that comes with IBD that you may not get from from those who don’t understand.

Amber Tresca 00:08:08 Yeah, 100%. And you touched on many of the ways that being involved in community is helpful for you. I have discovered similar. And then I’m sure other people have their stories as well. How being involved in community has supported them through, you know, practical things like learning about how like, you know, some pickle juice can be hydrating, you know, when you’re going to get a blood draw.

Amber Tresca 00:08:36 or lately it seems like every time I post about the fact that, yes, you can have gummy bears while you’re prepping for a colonoscopy, there’s folks that don’t know that.

Aaron Blocker 00:08:45 So that’s why the other day because I posted when I have a colonoscopy like 6 or 7 months ago about it, and they were like, I didn’t make it up. Gummy bears. I was like, yeah, yeah, it gets you through it.

Amber Tresca 00:08:56 It gets you through it. Yep, it sure does. Just no red or orange or purple. which is kind of a bummer, but, you get to the point where the green ones look real good. So. I think also, it’s been helpful for mental health, in a variety of ways. Was there a question that you asked in your brand new community or something that got addressed there that was really helpful to you after you were just diagnosed?

Aaron Blocker 00:09:25 Yeah, I think so. One of the first, like, people that I talked to and met was somebody who I still talked to today.

Aaron Blocker 00:09:32 And but it was I think I was getting ready at that time to start some infusions. And they had been on that as well. And so I was just like, what did you know? What did you experience? What should I experience? And they offered a lot of helpful tips as well. Like, you know, make sure you’re hydrated and and things like that. And that gave me their experience. And so I think that was really, really helpful because I was still kind of young and, and new to this disease. And so the thought and prospect of getting infusions was scary. And so, you know, they were very, very helpful in that way. And again, it was just really nice to be able to talk to somebody in general, being an 18 year old, newly diagnosed college kid who had no clue what, you know, what I was about to go through. And so to have somebody to answer some of those questions was really helpful and to be a little bit of a sounding board in that way, because I didn’t again, I didn’t know what, what what to expect and, and what was about to happen that was allowed to happen in that first year of being diagnosed.

Aaron Blocker 00:10:32 That was, you know, there was a hospitalization. There was actually two hospitalizations. And I had just gone through all of the testing, the colonoscopy, the eggs, the pill cams, the CTS, the MRI, like all of that. And so It was just really helpful to to be able to have them talk. To have them to talk to you in that way. And so yeah, I mean, it was just it was nice at that time. And as a newly diagnosed patient to just ask to have somebody to talk to. And so they were really, really helpful in that way.

Amber Tresca 00:11:00 Yeah. And as you pointed out, look the internet isn’t always the most judgment free space. And I think for people coming to the community, I think it’s funny the way that you came to it, you created your own space. But also I think you were probably young enough that maybe you weren’t. And and the platforms were new enough that you probably weren’t so worried about that kind of a thing that that there wasn’t that intimidation factor that I think might be there for people today, and it might feel strange to make a post about their journey or to send a DM to somebody like you or somebody like me and ask a question.

Amber Tresca 00:11:44 And so I’m wondering if you have any advice for people when they’re looking to start getting involved?

Aaron Blocker 00:11:52 Yeah, I mean, I think that that’s a really, really good point. You know, back then I wasn’t quite as I mean, I was new to it anyway. So you’re kind of naive. And again, things were very new. So I wasn’t really worried about all the judgment that is out there. You can come your way. And so it’s very different today. I mean, you can end the thing too. Like you just have to know that when you when you decide to post that, you know, a lot of people could see it. Even if nowadays, even if you don’t have a big following to start with. I mean, something can go viral in an instant these days. And so you just have to be be okay with that. But my advice to you is if you feel like you’re ready to post or start a community or something, just just do it. You know, don’t worry about some of the other things.

Aaron Blocker 00:12:35 People are always going to have an opinion. They’re always gonna have something to say. And sometimes it’s negative. And so just know that a lot of times they’re not pointing it directly at you, but just know that, you know, there are things that that can come from it. There are a lot of good things that can come from posting and being involved in a community and starting your own community, and there are some negative things that are out there that can happen. So, so just be aware of that. But I never tell anybody like I’m like, if you’re ready to post and you feel like you’re ready to do this, then do it. You know, I think that the more people who share their stories and the things that they go through, the better, because everybody has a different experience, a different lived experience than, you know, than somebody else. And so you just have to again, you just kind of have to be, be just aware that you may get some negative comments here and there and some, some random things that come through.

Aaron Blocker 00:13:27 And it’s just unfortunately part of it. But as long as you’re okay with it, then that’s fine. And I don’t really I mean, just the other day, I had somebody on one of my posts tell me that, I don’t know. He said something to the effect of. I get nothing from anything that you post and so and something and it was just like this thing and like I was just like. And I don’t always respond to that, but I was just like, that’s okay. Like, you don’t have to watch or read my stuff. You know, you also don’t have to comment on it if you don’t get anything from it. But I do hope that you find the support in the community that you that you need. But it’s just things like that. People do that sometimes and it’s just part of it. You just have to just kind of let it let it be, you know, you just let it go. So even today, I still get stuff like that. And it’s just it doesn’t affect me anymore.

Aaron Blocker 00:14:16 I will say, you know, the first like, negative negative comment you get, you will probably take it to kind of heart. But my advice is to just don’t. People are going to say what they’re going to say. And and you just kind of, you know, let it let it go. But yeah, I think, you know, if you’re ready to post, I always tell people to post. I mean, there’s an I’m again, a firm believer that the more people to share, the better you just. You do have to just remember that it could reach a lot of people and that’s awesome. But it also can be overwhelming in the beginning. So just kind of pace yourself.

[MUSIC: Inside Beat]

Amber Tresca 00:14:52 Coming up, Aaron talks about the ways that he combats misinformation and disinformation.

Amber Tresca: Aaron, is there anything people should think about or be aware of before they start sharing their disease journey online?

Aaron Blocker 00:15:16 I mean, again, it just kind of comes back to just be be aware that, you know, it could one it could reach a lot of people.

Aaron Blocker 00:15:22 People may have some negative things to say, but also I think just kind of think about think about what you want to share and, and how much you want to share as well. You know, at first it’s probably easier to just start sharing a little bit about yourself and your disease and things like that, but then you know and see, test it out, see how that is. See how it’s like for yourself. So to share a little bit of your story and, and before you go into all the details, sometimes it’s nice to just kind of test the waters and see how you feel about it. And, and also like, just know that there are a lot of times the stuff that we kind of post online, like stuff that we do like talking about IBD and, and, you know, chronic illness, it is it can be like kind of a niche thing to talk about. And so yeah, I always you always hear people talking about, oh, my videos only get 200 views or my posts only get a couple hundred people on it.

Aaron Blocker 00:16:15 And like just know that that don’t you don’t do it for that. Right. Like I’ve never posted or done anything to go viral or things like that. That’s just not what I’ve done it for. But I also think that, like, if you had 200 people come up to you and tell you that, you know, they loved something that you just did or you had. You know, you had ten people come up to you in real life and say, oh, that was awesome. You know, like how you would feel about that. And so just just know that not everything is going to get a ton of views or a ton of things like that. So just I would say, don’t do it for that. I’ve always done it. I’ve always posted and done things just so that it hopefully helps one person or two people. And if a lot of people see it, great. If ten people see it, okay. But you just have to know that it’s not always it’s not always what you know, what you put out or something’s wrong with what you’ve done and the things that you’ve shared in terms of how you know perfect or however you want it to be.

Aaron Blocker 00:17:16 It’s just it can be a very niche thing to talk about. And so and it may not and it may not resonate with everybody. And that’s okay. People always think that, you know, they’re going to do something and make it millions of views. And it could and that’s awesome. Like that’s incredible. The more people that get to see what we deal with, the better. We’ll also know that there are times where it’s just going to reach a small, specific group of people, and that’s also okay. And it may. And you never know if that small group of people, if there’s somebody that just really needed to hear that today. And that’s one of the things that I get sometimes where people are like, look, I really needed to see this today and like, I’m glad that you posted this. And that’s honestly better than any that’s better than a million views or anything like that. You know, just to know that one person, you know, got something from something that you’ve done.

Aaron Blocker 00:17:59 And that’s kind of always been my motivation for it. And and if people want to follow me for that, great people want to like, comment all that stuff. Fantastic. But other. But I again just know that, you know, it may not get millions of views every time you post, but I always say don’t really do it for that just because it helps you be more authentic when you’re trying to. So when you’re just posting kind of to share and hope that somebody, that one person gets something from it.

Amber Tresca 00:18:28 Yeah, it has to come from a place of passion. It can’t come from a place of I’m going to. Now this is going to be my job or something like that. Like it’s just not, Even though you and I do lots of work in the space, we both actually have jobs. Like. Like, you know, the YouTube channels. That’s not our job. So that’s it’s passion. It comes from passion and wanting to correct things for people that we’ve lived through, that we know that other people shouldn’t have to live through those things as well.

Amber Tresca 00:19:10 Yeah. And so all right, we have to go to misinformation and disinformation. I know that this is going to make you light up like a Christmas tree. because it is something that is so important to you. Yeah. To me as well. but I’ll tell you what, Erin, I have a policy that I do not fight with people on the internet. But you, my friend, are not afraid to take on the grifters and the scammers. And sometimes, I mean, it’s kind of enjoyable. I’m sitting here with a very small amount of popcorn because I can’t eat that much because it can get contentious. And you’ve said that these things don’t bother you, but really, how do you do that work and not let it not let it bother you, not let it discourage you?

Aaron Blocker 00:19:53 Yeah. I mean, you know, I’m not going to say that there aren’t sometimes where it does get under my skin for sure. I mean, because there are some times that you do it and you’re right.

Aaron Blocker 00:20:03 Like, I do respond to more people than I probably should. but but, just, you know, I think you have to for me, like, I know there comes a time when I just have to cut it off kind of thing, you know, like if I and again, I’m very passionate about correcting all this stuff, especially, you know, as long as we’ve been on the internet, there’s always been misinformation and disinformation and, and the reason that I know that you and I both like to share share correct information is because there are people out there who get harmed from that information. There are people in our own community and our IBD community that have been harmed and get hurt from from misinformation and disinformation. And so that’s the reason that we we do this. And so I think that, you know, part of it is knowing that it’s trying to help others. And and as you know, it’s not always about responding specifically to people. Sometimes we see stuff on the internet and then what do you know? We post a video about something very specific, and it’s because we’re trying to respond to some kind of trend or something that’s kind of popped up in our community.

Aaron Blocker 00:21:11 But you’re right, it can get contentious if you respond to certain people. And it’s not always for me. I mean, obviously, we all know, I respond to multiple things, but it’s really just knowing kind of when to cut it off, like you’re, again, you’re not going to, like, always change that person’s mind. And that’s really not what it’s about. It’s not always about. Because usually the people who are posting deliberate misinformation and information disinformation are doing it to, again, sometimes be a grifter, sometimes be a scammer some. And oftentimes, if they genuinely believe in that misinformation, you respond to them. It’s not always going to change their mind. The reason I do some of that is because, especially if a lot of people have seen it, is to just put something out there like, look, this is wrong. Like, this is not right. Here’s why. And just hoping that it helps somebody who’s reading that comment that comes across it that’s like, oh, okay.

Aaron Blocker 00:22:10 Well this is, you know, and and this is actually correct. I, you know, I’ll give a source early on when I first decided to start responding directly to people, and it was really after I got through my master’s degree and felt more comfortable with, like the knowledge that I had on certain things. And I will be the first to tell anybody that I don’t know everything I don’t. And I think that’s part of part of it. You will heal. You people think, act like they know everything and that’s just not it. Like, I don’t know everything. Nobody does. But I know there are certain things that I know a lot about. And so you just kind of do it and let people respond. And I’ve gone, have I gone back and forth with people for a while? Sure. I have there sometimes where people, where people actually invite decent conversation in. And so I will happily kind of have a conversation with people. But there comes a time when if people start cursing at you or like calling you names and stuff like that, that’s the point where you’re just like, you know what? This is going nowhere.

Aaron Blocker 00:23:15 I’ve made some valid points. I’m going to stop responding to you. Oftentimes, there are people that you’re not really trying to just change that person’s mind or trying to help anybody that comes across it and comes across that and provide a valid resource, valid information and source to to really that people can see. And hopefully again, just like posting anything, hopefully one person gets something from that and doesn’t fall into the trap of misinformation and disinformation. So that’s kind of kind of why I do it. And again, I probably shouldn’t respond to as many people as I do, but it is what it is.

Amber Tresca 00:23:53 Well, it’s entertaining at times and I know that you can handle it, although sometimes I’m like, oh, you know, I wish I could get that involved. I used to say, that’s the kind of thing that I used to do as well. And in the history of my going after people about about really posting things that are absolutely wrong. I’ve only ever gotten somebody to change something once.

Amber Tresca 00:24:19 Sure. So I kind of felt like, well, maybe this isn’t the space for me, so I just kind of leave it alone now and do the same as what you’re doing. Sometimes you see something that is obviously wrong. And so what I will do is put out or amplify someone else’s better information. Exactly. So it’s kind of like a sub tweet in a way. Maybe. Sure. Yeah.

Aaron Blocker 00:24:43 And there are a lot of people these days that are, that are putting out, that are combating a lot of different kind of misinformation and disinformation, who are much more educated than I am. So sometimes I just repost what they what they put out.

Amber Tresca 00:24:59 Yeah, absolutely. That’s so helpful as well. So I want to talk for a minute about, I don’t know, you and I have talked about this before, but now I’m going to ask you to answer it being recorded because you’ve been a constant presence. I think we just established that it’s been about 15 years. Right. Yeah.

Amber Tresca 00:25:20 and in these past 15 years, you’ve been through so many things. You were diagnosed with the hypo phosphatase, the ups and downs with your Crohn’s, you. The birth of three children. You have one older child, and then you have a set of twins. Right. Still in diapers right now. So I don’t know how you have time for all of this. and so sometimes people need to step back from this type of work because real life is happening or health situations are happening. So how have you found balance? I’m saying that even though I know that the answer is probably not that there actually is balance, but how do you find a way to stay present in these communities and then still manage everything going on with your health and your life?

Aaron Blocker 00:26:10 Yeah, I mean, you know, it’s it’s not as balanced as it probably should be for sure. you know, there’s I do a lot as you. I’m sure I know you do too. We do a lot of this and what we call free time, and it’s not necessarily free time.

Aaron Blocker 00:26:28 It’s like when my kids go to bed or on my lunch break or things like that. But there have definitely been times where I’ve had to just kind of either step completely back for a little bit, or just maybe not post as much, maybe not do except certain things. And some of that is stuff that people don’t see, right? Like there are things that we turn, things that we turn down, things that, you know, or like people are like, can you post something like, honestly, I don’t have the time, but it can be challenging number one. Like it can be very challenging to to manage just being chronically ill in general. So for me, I’ve just always tried to to one, I always put my health kind of first in terms of when I am posting or when I’m involved in the community. I’ve tried to. It’s taken a long time to realize, like, I think, you know, you probably do the same, but like there are times where early on I felt like I was accepting everything because I didn’t know, like, you know, I was posting and stuff like that even when I probably shouldn’t be.

Aaron Blocker 00:27:32 Just because you don’t know when you have the time or if an opportunity will come up again. But what I’ve learned is that there’s always another opportunity. There’s always time to post. There’s always time to, you know, to write that blog or do something later. So it’s really just trying to figure out what, what, what worked with my schedule and how I wanted to personally be involved in the amount of time that I felt like I could do it, I will. I mean, again, I love the community. I love this community, I love the IBD community, I love the rare disease community, and the work is something that that kind of brings me joy, truthfully. You know, it’s it’s how I cope with living with these diseases as well. It’s people think that maybe I post and share, just like educate people or show people what it’s like living with chronic illness and things like that. And that’s true. While that is true, it’s also a coping strategy for me being able to just talk about what I’m going through at the time.

Aaron Blocker 00:28:31 And so when people see me posting, like through surgery or after I’ve had a colonoscopy or all of these scans, it’s really a double whammy kind of thing where I get to like, I get to share this content, but I also get to talk about what I just went through to, you know, and it helps me kind of cope with it. And so it’s it’s more of a, it’s more of it helps me and hopefully helps others kind of thing. But again, it’s just realizing that, you know, you need to you need to find your own balance, whatever works for you. I put my health first. If I am too sick to do it now, I just, you know, I’m at a point where I’m, you know, it is what it is, and I just wait. I always put my family and my kids first two up there, right up there with my health. Like, if there’s something going on with my wife or my kids or something in my family, I’m always going to put that first and go do it rather than post.

Aaron Blocker 00:29:26 And people will see that there were lags. And some of the times where I didn’t post as much or, you know, I maybe not responded to an email for a while and typically I’m dealing with something personal. But again, I I’m very passionate about this work, so it’s just something that I’ve found time for that I’ve made the time for. And I know that not everybody can do that for sure, but also to like sometimes people do forget that we’re also sick, you know, that we also are dealing with stuff. And so, you know, I just I’ve tried to like remind people like, if I’m like not around, there’s a reason and I if I have the ability to sometimes I’ll tell people that like sometimes I really you may not hear from for me for a minute. I’m going through something. But people do forget that you’re. We’re also sick. So if you do stop posting for a little bit, people are like, where have you been? You know, I’m like, well, I just had surgery, you know, kind of thing.

Aaron Blocker 00:30:24 And, and so it’s just I’ve, I’ve just somehow built it into my life. And I thankfully have a really great wife who’s really supportive of the work I do, but also, I am also very aware that I’m going to ensure that I’m here for that. I’m that I’m present and where I need to be and when I need to be. And so again, that may mean recording videos on my lunch break while everybody’s away from, from the house and at school or things like that, you know? So it’s just kind of, I like you just built it in to my life and made it a part of what I do. And, and but again, realizing that if my health is, is if I’m going through something really serious, then I just know that I need to take a break and I need to do it. And also, when you do this for so long, we talk about mental health. There’s a mental health aspect to this posting online and being part of the community and hearing other stories, and also like hearing what people go through can be really emotionally and mentally draining.

Aaron Blocker 00:31:26 And so I think it’s important to realize that too, that sometimes you need to just kind of cut it off for a day or two and realize that, you know, you have to kind of deal with yourself. Because, again, we hear stuff from the community all the time, and it can be heartbreaking to hear what people are going through and to try to provide support. But you also have to know that you kind of have you have to take care of your own health and your mental health as well. So just know that there’s a balance of things that you kind of have to go through.

Amber Tresca 00:31:52 So I remember something that Hank Green said, which I’m going to try to paraphrase him and probably get it wrong, but he says that everything that I put on the internet is me, but I don’t put all of me on the internet. Right. And so I think that’s something. Save something for yourself.

Aaron Blocker 00:32:14 Yes. And I love that. That’s really important. And again that again people like.

Aaron Blocker 00:32:19 Yeah I mean I have a whole other life that’s not being like a chronic illness is part of our life and something we do every single day. But it’s not all we do. Right. I mean, I’ve got we’ve got kids and things like that that we don’t always share with the public for many reasons. But yeah, people think that everything that you put on the internet is just your life, and it’s really not. It’s really not. Social media is again, I think has caused a, I don’t know, kind of like a blind side to, to people what people expect and people think. And it’s just, you know, life is not glamorous. But also like, I don’t think we post anything where it shows us glamorous, you know what I mean? Like we’re posting about our colonoscopies, you know.

Amber Tresca 00:33:02 I don’t I don’t think so, but I have but I have also been accused of being elitist. And posting about things that seem like they’re really fun, yet exclusive or also being cliquey.

Amber Tresca 00:33:19 And I think part of that is also because you can’t actually respond to everything in the way that you would like to all of the time. Right. I would love to be able to research the amount of questions that people ask me really thoroughly, because sometimes they ask questions that, yeah, I would like to know the answer to that as well. and I will always do my best, but I’m just one person and I actually have work that you know nothing about that I have to do in order to pay my mortgage. So.

Aaron Blocker 4 00:33:52 Right. Thanks. Me, too.

Aaron Blocker 00:33:56 Yeah, I mean, again. Yeah. People don’t. Yeah. Again, that also goes back to like, not Pete. You’re going to get stuff on the internet that’s, you know, unfortunate and but yeah, me too. I would love to respond to everybody, but I just, I don’t I can’t I don’t have the time. I try to find trends of what people are asking or what people are doing and, and respond to those.

Aaron Blocker 00:34:19 But we again, also, we don’t know everything. You know, we gotta.

Amber Tresca 00:34:22 Yeah.

Aaron Blocker 00:34:23 We and also again, we don’t like to provide misinformation.

Amber Tresca 00:34:26 So I often refer out.

Aaron Blocker 4 00:34:28 Exactly.

[MUSIC: Pulse Beat]

Amber Tresca 00:34:28 So I will send people to somebody else. So this person is doing something similar. They probably know more well. So I got out of it. Aaron, I’m wondering if there has been a time when you have learned something through your disease journey or through your journey with creating and participating materially in community that you’ve learned the hard way?

Aaron Blocker 00:34:55 Yeah, I mean, I think that I had been called out on something that I posted that was incorrect and things like that. And so, you know, I learned a hard lesson of like, really have to be careful what you post kind of thing when it comes to misinformation, like responding to two things or just putting out some kind of educational content because somebody is going to call you out on it and which is which is good. you know, I was glad that I got called out on something that was not correct.

Aaron Blocker 00:35:25 And then you just had to add took it off kind of thing and was like, hey, look, you know, my bad. Like, you know, my bad. I posted something that was incorrect. So I think also like it’s very important, like when you’re posting stuff that if for some reason you post something that may be inaccurate, you didn’t know. It’s always on purpose, of course, but knowing that, you know, people will you can get called out on it. And it’s important, I think, to not always completely take that to heart, but it’s important to respond and say, look, my my dad, my fault. I didn’t, you know, there was something that was incorrect in this. I’ve corrected it. So one, it kind of gives you more credibility that way. People respect that. If you post something that’s inaccurate or things like that that, you know, if you if you own up to it, people are going to respect you much more.

Aaron Blocker 00:36:16 And so we’re not perfect. Like we’re not perfect people. We, we don’t you know, we don’t get it right every single time. And so to just know that in when you’re posting anything online, if for some reason you post something that’s inaccurate, somebody’s going to call you out on it. Don’t always don’t always take it in like a malicious way kind of thing. There will be people that try to do it in a malicious way, but like there are people you know who are trying to to help you. And so take that help and own up to some of the stuff that that you’re doing. I learned some of that the hard way early on. And while it kind of sucked to kind of hear that from, from others to, to own up to it publicly and also is not the funniest thing to have to do, but it’s it’s important and it’s, you know, there will be a lot of criticism that comes your way. Some of it’s very good, very constructive, some of it’s not, but just kind of take it and and kind of do better.

Aaron Blocker 00:37:10 And also again, you know, I’ve had a lot of help when it comes to posting videos and content and things like that. If I had a lot of people give me some really good advice and really good tips, and I’ve had people offer to to show me certain things. And so I’ve, I’ve always I’ve always tried to not take it as what I put out was, was bad or not like visually great, but like, hey, look, this is something that they saw that they think that I could do better, or they can provide something that’s very helpful in creating this content. So I’ve tried to accept that as well. And again, I think also realizing too, that we’ve talked about this a little bit, but knowing that you don’t know everything, so be okay with referring people to somebody else and try to elevate somebody else as well in the community. Because like me, I’ve never had surgery for my ID, I’ve never had any kind of IBD surgery. And so if somebody asked me about surgery, I’m you know, my experience is, is not with like bowel surgery.

Aaron Blocker 00:38:11 So I always refer to people to somebody else, like somebody like, who’s had surgery and, and I’ve had other surgeries, but I’ve never had bowel surgery. So just be okay with like referring people out and and respecting that you don’t know everything. Don’t try to respond to something you’re not familiar with. I mean, I can give you general information about surgery. I will tell you all day that we know that surgery is is a great option for a lot of patients. And it’s not just a last, you know, an end to all, be all kind of treatment. But I’m not going to be able to give you that experience of having surgery. So I think it’s very important to also to know that to refer people out. So just just be open and open to criticism construction when you do this because it’s going to come your way and own up to things that you may have said that are incorrect and just do better afterwards. don’t let it kind of defeat you and and and do all this to just stop because you’re getting criticism.

Aaron Blocker 00:39:08 Just kind of accept it and see how somebody can help you be better and do better things.

Amber Tresca 00:39:15 Yeah. I have also learned that lesson, a few times over because I’m guilty of the knee jerk reaction. Yes. This is why I will now refrain from responding to things immediately, but instead take a moment to think.

Aaron Blocker 00:39:31 Yeah.

Amber Tresca 00:39:31 And sometimes take a walk and think about it before I respond.

Aaron Blocker 4 00:39:36 Yeah.

Amber Tresca 00:39:37 And maybe it’s just because I’m getting older. So anyway.

Aaron Blocker 00:39:43 No, the same thing. I’ve learned that too. I don’t if I respond to something in the heat of the moment, I’m probably going to regret it. And so I will probably have to delete that.

Amber Tresca 00:39:53 It has never made me feel better. And yeah, it does not ever come out well.

Amber Tresca 00:40:00 It just doesn’t. You don’t feel better. You’re not changing somebody’s opinion of you or of what you did. And so it is just better to have a more measured response.

Aaron Blocker 00:40:11 Exactly. So yeah.

Amber Tresca 00:40:13 Very 100% learn the hard way. Okay, Aaron, let’s go over your social media so that anything else that you want to share. So where can listeners find you?

Aaron Blocker 00:40:22 I mean, I’m all over the place on like, Instagram, TikTok. it’s at Aaron Blocker underscore. You can find me on my website and blocker.com. My Facebook page is just support Crohn’s disease and most of colitis. Or it’s like facebook.com slash supported. You can also just Google my name and some of my stuff will come up. if you can’t remember all of that. So I’m all over the place. I love to talk to people. So yeah, I’m just I’m I’m there.

[MUSIC: Digest This Beat]

Amber Tresca 00:40:56 You’re there and I appreciate your being there. I appreciate you saying yes to me for creating this episode together, because you were the perfect person for it, and I knew that. So thank you for being my friend. Thank you for doing all the work you do in the community and correcting the disinformation, because I’m not going to do that.

Amber Tresca 00:41:16 And, and so it’s been so lovely getting to know this particular side of you a little bit better.

Aaron Blocker 00:41:24 Well, thank you for having me. I always can make time for you. thank you for being my friend and thinking of me as well. I love the work that you do. And we’ve been friends for a really long time, so it’s always fun to come and and chit chat and talk about, you know, talk about living with IBD. So thank you for having me. And thank you for all the stuff that you do as well in the community. You you’re a great resource for a lot of people. You’re a great resource for myself. So I really appreciate it. And involving me is a pleasure. So thank you.

Amber Tresca 00:41:53 Hey super listener! Check the show notes to find links and information about the topics discussed in this episode. Plus, get a written transcript and much more on my website about IBD. Com. If you enjoyed this episode, please consider sharing it with someone or leaving a rating in your podcast app.

Amber Tresca 00:42:12 Reviews and ratings help me grow the show and bring you more great content. This episode was sponsored by Connecting to Cure and I am so grateful for their support. Thanks for listening and remember, until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio.

About IBD

Articles and podcasts about inflammatory bowel disease (Crohn's disease and ulcerative colitis).

Community In IBD: How to Stop Being Isolated Featuring Aaron Blocker – About IBD Podcast Episode 184

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