Does living with Crohn’s disease or ulcerative colitis make a person more resilient? And is resilience something that should be a part of management plan for people with inflammatory bowel disease (IBD) or other chronic illnesses? Mara Shapiro, healthcare journalist and Crohn’s disease patient, has had no other choice but to find a way towards resilience in her life, having lived through grief and loss early in life, followed by the diagnosis of several chronic illnesses. She provides deep insight on coping mechanisms and resilience, including the various ways we can look at these ideas to fit our own needs.
Find Mara Shapiro (and Morty) at:
- Instagram: https://www.instagram.com/marajshapiro/ and https://www.instagram.com/morty.the.red.corgi/
- Twitter: https://twitter.com/marajshapiro
- Trellis Health: https://www.your.trellushealth.com/post/mara-s-journey-part-2
- Crohn’s and Colitis Young Adult Network: https://www.ccyanetwork.org/news/w04wrzo2fa3a04qc7vg1667k12zxyy
- Blogspot: https://futuremdwithibd.blogspot.com/2020/12/a-reflection-on-2020.html
Find Amber J Tresca at:
- AboutIBD.com: https://aboutibd.com/
- Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
- Facebook: https://www.facebook.com/aboutIBD
- Twitter: https://twitter.com/aboutIBD
- Pinterest: https://www.pinterest.com/aboutibd/
- Instagram: https://www.instagram.com/about_IBD/
- Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney, https://www.instagram.com/maccooneycomposer/
- Theme music, IBD Dance Party, is from ©Cooney Studio: https://maccooney.bandcamp.com/track/ibd-dance-party-single
[MUSIC: About IBD Theme]
Amber Tresca 0:00
I’m Amber Tresca. And this is About IBD. I’m a medical writer and patient educator who lives with a J pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis, about their disease, and to bring awareness to the patient journey.
Amber Tresca 0:20
Welcome to Episode 123.
Amber Tresca 0:22
If you live with an IBD, or are a care partner, you probably have people tell you that you’re strong, or that they don’t know how you manage everything. I think in most cases, people mean well, but at times, it can be frustrating, because we feel as though we don’t have any other choice. We didn’t ask to be ill, and we have to find a way to thrive through it. Because it’s not like there’s another option.
Amber Tresca 0:45
You may have heard this word resilience being used to describe people with IBD or other people with chronic illness or disabilities. But what does it mean to be resilient? To find out more about the concept of resilience?
Amber Tresca 0:57
I speak with Mara Shapiro, Mara is a medical journalist who lives with Crohn’s disease. Her journey is complicated because IBD wasn’t the first chronic illness she was diagnosed with. She’s thought deeply about the concept of resilience and how she applies it to her life. Her experiences provide a roadmap for the rest of us as we navigate the ups and downs of IBD and how it affects our lives.
Amber Tresca 1:24
Mara, thank you so much for coming on about IBD. I’m really excited to speak with you today about your journey.
Mara Shapiro 1:30
Yeah. Thank you so much, Amber, for having me. I’m so thrilled to be here.
Amber Tresca 1:34
Would you start off by just giving a brief introduction and tell our listeners who you are and what your diagnosis is?
Mara Shapiro 1:41
Hi, I’m Mara. I live with Crohn’s disease. And I’m currently a medical journalist and patient journalist for Trellis Health. And I live in Charlottesville, Virginia with Morty, the three year old Corgi.
Amber Tresca 1:55
I have, of course, read a lot of your writing and preparing to speak to you today. So I knew that you’re a relatively recently diagnosed Crohn’s disease patient, but your journey goes far back with other things, which you’re going to tell us about.
Amber Tresca 2:13
So in your writing, I saw that you described yourself as a complicated patient. That is an understatement, even in the Crohn’s disease world. So I wonder if you would take me back a few years to your teen years and go through the things that led up to your being diagnosed with Crohn’s disease, because that was not your first diagnosis, unfortunately,
Mara Shapiro 2:37
Yeah. This is funny. This is like nerve wracking, like going to a new doctor in a sense and having to go through your medical history.
Amber Tresca 2:45
Mara Shapiro 2:46
No, no, mostly in a good way. Because why I’m in control.
Amber Tresca 2:49
Hopefully it’s cathartic.
Mara Shapiro 2:49
Yes, I’m in control here. And it’s not I’m not, I don’t need you to help me with anything. So it’s definitely fun. But yeah, a lot of my medical journey is very complex and complicated. And I would say really nonlinear. And oftentimes, I struggled to kind of see myself and a lot of other, you know, patients sharing their stories, and struggle to kind of relate to other patient advocates, in a sense, because of my rather interesting slew of comorbidities. And I feel like we don’t talk about this kind of nonlinear difficult journey that a lot of us deal with as much.
Mara Shapiro 3:25
I had a relatively healthy childhood. But when I was 13, I was diagnosed with asthma, and I was an athlete all my life playing all all sorts of sports and then all of a sudden one day started wheezing and turning blue and struggling to breathe and was kind of diagnosed with asthma had to go on all these medications for that and that was definitely difficult for me like I said, coming from not really having any health issues prior to that to now you know, struggling to play sports and you know, go do PE in school, it felt like at the moment like a life altering, terrible thing.
Amber Tresca 4:02
Wow. So even even PE and school was difficult. Your asthma was that pronounced?
Mara Shapiro 4:07
Oh yeah. I was. I would have to hit PE first period in middle school and I would push myself so hard and pee that I would have to then go to the nurse, take a lot of albuterol and oftentimes have to go home because I couldn’t sit in math class afterwards, because I’d be like jittery and shaking and still having trouble breathing and coughing and it just hit the point where even like the school nurse was like, I think you need to get a note to get out of PE because Mara doesn’t know how to take it easy. And then when I was 16, I was diagnosed with POTS and Ehlers Danlos Syndrome, that genetic connective tissue disorder.
Amber Tresca 4:41
What does POTS stand for, by the way, because I always forget.
Mara Shapiro 4:44
Yep, so POTS stands for a Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia, or an autonomic nervous system dysfunction. Really common I feel like a relatively common comorbidity for other patients with other chronic illnesses. For me um, I struggled a lot with tachycardia, and a lot of fatigue. And I manage that condition primarily for those few years with IV saline infusions.
Mara Shapiro 5:11
When I was 16, I was also treated for latent tuberculosis that was found when I applied to volunteer at my local children’s hospital. And I struggled a lot through that antibiotic treatment. So basically, they found that I had been exposed to TB at some point in my life, and it was walled off. I know a lot of patients with IBD, you, you hear oh, you have to go get tested for TB before you start these biologics. So basically, I went through the nine months of antibiotic treatment to kind of kill this, you know, dormant TB infection.
Mara Shapiro 5:43
After that treatment, when I was about 17, I developed recurrent C diff, many times so kept getting C Diff, was on vancomycin for like four to five months at one point, looking back, not really sure why I didn’t go through the fecal transplant, still something that worth discussing and is on the table currently for me. So kind of at that time was when the GI issues started to become a big problem, but we could never really figure out what was going on.
Mara Shapiro 6:08
But really, I was just struggling with nausea, stomach pain, diarrhea, on and off really just having a hard time eating, I was really malnourished and struggling to just get calories in at that time. And so then, my Crohn’s diagnosis comes into the picture as the pandemic starts, which is very interesting. So when I was 20, I was diagnosed with iron deficiency anemia. And that was kind of what I think finally got people to take things seriously.
Mara Shapiro 6:36
I also have a family history of IBD. So it was a little interesting that, you know, given them My uncle has severe UC, and a few other cousins that it took so long to kind of get people running, running the right tests, during the time of the pandemic kind of this was, you know, spring 2020, right, when things were pretty bad. It was really hard to get non emergent procedures scheduled.
Mara Shapiro 7:01
So we kind of all decided, let’s head to Mayo Clinic. So me my dad and Morty took off on a road trip to Rochester, Minnesota. Unfortunately, the first week we were there, we didn’t really find anything. We did a lot of tests and kind of figured out what it wasn’t. And that was really frustrating. Well, I was home maybe for about 10 days, two weeks, and things got worse, my symptoms got a lot worse. So they said how quickly can you get back here?
Mara Shapiro 7:30
Two days later, we got back in the car drove another 1800 miles back to Rochester, Minnesota. And that was when I was kind of like, okay, like, I’m not leaving until we figure out what’s going on. Because this is just this is exhausting.
Amber Tresca 7:45
Mara Shapiro 7:45
This is ridiculous. So finally did a CT angiography showed, you know, a lot of inflammation and scarring and my ileum did the colonoscopy was like, well, there we go. Like, you have Crohn’s.
Mara Shapiro 8:00
And I remember crying when I woke up from the procedure, and my the doctor was confused, and he was like, You’re gonna be okay. Like, he thought I was upset because I was of the diagnosis. And I was like, No, you just gave me my life back.
Amber Tresca 8:18
Mara Shapiro 8:18
And I think that was really interesting. And I kind of reflect on on that, that story and that narrative a lot in my writing, because that feeling of relief when you get a diagnosis like this, after so many years of not knowing is a really powerful feeling. And that’s the that’s the crone story in a nutshell.
Amber Tresca 8:41
Tuberculosis is common in other parts of the world. But it is not a common thing in the United States. Like that’s how did that happen? Like, what do you think happened? How did you pick up tuberculosis?
Mara Shapiro 8:56
So very good question. One that I wish I had a better answer to, because when we talk a little bit about my adrenal insufficiency and my Addison’s disease diagnosis, we’re still really not sure what happened there either. And what kind of triggered this, you know, shutting down of my adrenal glands, and perhaps there’s a potential link to tuberculosis being the cause of that as well.
Mara Shapiro 9:21
So yeah, it’s very interesting. I did, have done some international travel in my life. And in my early years, my little sister is adopted from China. So in 2005, I did travel with my parents to China for a few weeks to adopt my sister Leah, and have done you know, visited South Africa to see some family in 2015. My pulmonologist at the time did tell me that she thought I had just as high of a risk of catching it there in Orange County, California.
Mara Shapiro 9:50
So I’m not really sure what she meant by that have there been a lot of you know, local cases, but it is something that needs it’s not like COVID where you can be around someone For a short period of time and catch it right to my knowledge tuberculous is something you need more, you know, kind of a repeated, longer term exposure. But it’s in a very, very questionable part of my journey still, that makes me scratch my head to this day.
[MUSIC: About IBD Transition]
Amber Tresca 10:32
Let’s talk for a minute about the idea of resilience, which is something that you feature a lot in your own writing. How would you define resilience for yourself in your life? And how do you hold space for it in the context of chronic illness?
Mara Shapiro 10:50
Yeah, so I’ve loved the concept of resilience. I think for as long as I can remember a long before I met Dr. Laurie Keefer and heard about Trellis and it’s and how they’re applying resilience to the study of chronic illness, I lost my mom to stage four breast cancer when I was eight years old. And losing losing a parent as a child is quite traumatic, and a really difficult experience, you know, that’s impacted my life in a lot of really big undeniable ways.
Mara Shapiro 11:18
It’s made me the person I am today, but it’s still still something that is, is a really hard part of my life. But what it what it did teach me is how to be resilient, I feel like as a, as a child, I was left with no other choice, or at least that’s the way I’ve always looked at it, you know, I feel like resilience is been baked into me from dealing with that experience, and kind of imprinted on me at such an early age that it’s now this really strong, like core guiding principle in my life.
Mara Shapiro 11:47
So going through that part of my life, to now dealing with chronic illness and having to figure out how to how to how to keep going through some really difficult experiences, I definitely feel like I’ve leaned into that mentality of sometimes life is really hard. But we still have a life to live, and we can’t really change, you know, I can’t change the fact that my mom isn’t here. And I wish with every ounce of my being that she was, but I have to, I have to keep going anyway.
Mara Shapiro 12:18
And that’s always kind of just been the way that, that I’ve approached life. So kind of with chronic illness, and there’s obviously, you know, a grief associated with that, and some sadness and anger and frustration over this isn’t fair, I really wish that I didn’t have to deal with this. But you have to be super thankful that that you are here to deal with that.
Mara Shapiro 12:39
So that’s definitely kind of a little bit of my background on resilience and kind of how I’ve come to recognize resilience with chronic illness, because of the experience I’ve had, you know, so I can say that, you know, continuing on with, you know, joy and purpose and finding passion, despite some intense suffering is something that I’ve, I’ve kind of done for a really long time.
Mara Shapiro 13:01
So applying it to, you know, multiple chronic health conditions, has been challenging, but felt very natural to me, in a sense, you know, so the same way, I’m resilient with my grief, I feel like it’s kind of how I am with my chronic illness in a sense. There’s moments where I’m sad, and there’s moments that it’s not all sunshine and rainbows. But that doesn’t mean that you can’t still be resilient, I feel like that’s one of the things I feel really strongly about this idea of resilience is it’s a spectrum.
Mara Shapiro 13:34
And it’s not all or nothing. I think one of the biggest misconceptions is that it’s this all or nothing mindset over you’re either resilient or you’re not. And if you’re not resilient, you can’t ever be resilient. And I don’t think that’s true at all. You know, resilience is like a muscle that you flex and you work on in the gym, no different than anything else. And it’s something that always has room for improvement and growth. And no one can really claim they’re resilient 100% of the time. And I don’t think anyone is asking that of anyone.
Mara Shapiro 14:04
But it’s very easy to kind of get yourself into this mindset of, well, because I struggle with being resilient or bouncing back from some of my struggles, it doesn’t mean that I can’t always be that. For me, resilience is this practice, almost. And it’s a mindset more so than anything.
Mara Shapiro 14:22
One of my favorite coping statements and when I’m, you know, thinking about being resilient is no matter what happens, I have the strength and the tools to overcome it. And for me, that’s resilience, you know, believing in that statement, leave living that statement is one of the simplest ways that I tried to integrate resilience into my life with chronic illness. And what I’m really telling myself behind that statement is, I’ve been through a lot. I’ve learned a lot and while things may get scary and difficult, I have the ability to use what I’ve learned to get me through whatever challenges come my way.
Amber Tresca 14:56
Yeah, so your early experiences unfortunately, I mean, it’s unfortunate that you’ve had to learn how to be resilient, you’ve had to learn how to cope with grief, being diagnosed with multiple conditions as you are, it is a new process every time of going through that grief and then flexing that resilience muscle again. But hopefully you have not yet begun to feel as though that muscle is being overworked.
Amber Tresca 15:28
And so I want to push you a little bit more on the idea of resilience, because I’m seeing this theme in the online chronic illness community. And there are some people who feel differently about this word resilience, I think it is another side effect of the pandemic, and the collective trauma that we’re all living through.
Amber Tresca 15:52
And so I think some people have concerns about the expectation, about resilience, and that people who live with chronic illness need to be resilient. But that there’s also something to be said, for expecting more from the people around us, or from our health care providers and setting healthy boundaries. What do you think about finding that balance between boundaries and resilience and expecting more from the people that are around us? So what would you say to that idea? Or what would you say to those people?
Mara Shapiro 16:29
Yeah, I think balance is a is a key word here. And there, there is a way to find that balance. I feel like at least at least from where I’m standing in this. And in essence, I feel like you know, some of this talk about resilience can seem like this Hokey Pokey psychology, and that’s fine. People, people will get where they need to be however, they need to get there.
Mara Shapiro 16:51
And I used to meet a lot of these sorts of mindsets with a fair deal of skepticism too I’m definitely someone who, you know, you’re right is like, well, what’s wrong with the system, if everyone’s expecting people with chronic illness, to just walk around smiling and not complaining all the time.
Amber Tresca 17:08
Mara Shapiro 17:09
The coping statement you may land on is going to likely look a lot different than mine. But the underlying theme of reflecting on your, your strength and your ability to persevere, will likely be the same. And in essence, that’s what resilience is, is finding your inner strength in what you’ve already overcome, to keep overcoming as chronic illness patients, we’re not really taught or encouraged to really recognize that strength as often as we should.
Mara Shapiro 17:41
And but every one has it, because we’re all doing it. We’re all persevering and overcoming in our own way. And that doesn’t always have to look pretty and packaged. And, and put together, it’s how you’re taking those experiences into your life and learning from them. That I feel like is at the core of this idea of being resilient with chronic illness.
Mara Shapiro 18:06
Another common misconception is that resilience is in a sense, like invalidating people suffering, right? This idea that, you know, if you’re called resilient, that your your illness isn’t valid, or your pain isn’t real, I think that’s also an idea maybe that is seeping in from some of our health care providers. And, and that’s, again, I want to say, hopefully, not what’s actually being said to patients, because, again, resilience isn’t asking you to ignore your suffering it’s suggesting a way to accept and coexist with that suffering in a productive way.
Mara Shapiro 18:42
You know, we can’t really control the the physical suffering that that we live with as a result of our chronic illness. But we can control and kind of shape the way that the emotional suffering plays into that physical suffering. And I think that resilience is a key aspect and kind of finding that balance between, you know, what we can control and what we can’t control.
Mara Shapiro 19:05
But again, it’s something that you have to believe within yourself. And when you’re getting all these external pressures from social media, from your care team, from other patients. It’s very hard, I think, for someone to think how does resilience fit into my life, but really, at the at the core, it’s a self belief and it’s a mindset, you have to work and within yourself, and it’s helped it maybe it’s helpful for someone to be like, Hey, you’re resilient. But really, that’s not going to unlock the true power of this resilience mindset until you as an individual can understand and accept it within the context of your own journey.
Mara Shapiro 19:42
But what I can say is with the right support and guidance and learning to live with this resilience, focused mindset, can really pay these incredible dividends to overall quality of life and sense of well being and we also now have this really great body of clinical research that’s being done by Dr. Keefer and Dr. Dubinsky and the team at Mount Sinai, showing that resilience outcomes are leading to incredible improvements and IBD care which is really exciting to see as well.
[MUSIC: About IBD Transition]
Amber Tresca 20:34
Mara, you’re active in the chronic illness community and you’ve worn so many hats. Some of the group’s you’ve worked with include Crohn’s and Colitis Young Adults, Network, Generation Patient. And now Trellis Health. Tell me about these groups. And tell me a little bit about some of the work that you’ve done with them.
Mara Shapiro 20:50
Yeah, so I’m, I’m so thrilled to over the last few years really grow my my involvement in patient advocacy, it’s done. It’s done a lot for me, not just in kind of growing more social support and community, but really kind of helped me narrow in on my, you know, professional interests and passions as well.
Mara Shapiro 21:08
And, you know, Generation Patient and the Crohn’s and Colitis Young Adult Network really has changed my life. And I found them incidentally, on Instagram two years ago, when I was working on my honours thesis and IBD. Looking at chronicity, and identity and burnout, and trauma, and all of those things. And I found them through a post they had made about medical PTSD, I believe on a talk they had done with Dr. Tiffany Taft, and it just really sparked my interest. And so I applied then I applied to the CCYAN fellowship program for 2022 and was selected and in a sense, the rest is history.
Mara Shapiro 21:43
And I know my involvement with CCYAN and Generation Patient will only continue to grow. It’s truly incredible what Sneha and the team have done to not just foster this strong sense of community across the globe, but also to advocate for this incredible actionable change. And my favorite type of advocacy is really what we’re doing with these organizations, which is advocating for change for young adult patients as young adult patients ourselves. And it’s really exciting to see all the support that we also have from our medical advisory board and other members of the community and other patient advocates like yourself, Amber, it’s really incredible to feel welcomed into a space like this and to have our voices really heard.
Mara Shapiro 22:28
We’re doing a lot of health policy work now and health policy education through Generation Patient. And that’s truly incredible, to not just learn but to really be involved in some legislative action happening as well. And and I definitely encourage any other patient advocates to get involved with with what we’re doing over here. So yeah, I did get introduced to Trellis Health’s kind of through CCYAN when Dr. Laurie Keefer came to speak to the fellowship program at the beginning of the year.
Mara Shapiro 22:59
And I was just immediately in love and my jaw was on the floor. When I heard about Trellis and you know the phenomenal clinicians behind it. Both Laurie Kiefer and Dr. Marla Dubinski, both of which had become incredible mentors to me, over the course of the year, I got to further network with Dr. Keefer in person at DDW in May. So I kept expressing my interest and passion and what they were doing at Trellis I’ve always been interested in in mental health and looking to pursue a degree in clinical psychology in the future.
Mara Shapiro 23:30
And was just, again, like when you meet people doing phenomenal work like that, like what Dr. Keefer and Dr. Dubinsky are doing it, it’s not just great work, but when the people behind it are as exceptional and passionate and interested, it almost feels to me, in a sense, still too good to be true. I feel like as a patient, a lot of times you kind of get this mindset of I’m not really sure people are here to help me.
Mara Shapiro 23:56
And, you know, that’s kind of I’ve internalized that quite a bit over the years of, yeah, like my doctor is here to help me and give me my medicine and this, that and the other but I’m not really sure that you know, they’re really invested in me and my quality of life and really, you know, solving some of these problems and and what just blows my mind about Trellis and, and their background is is how they’re solving this problem of you know, this, this this gap that we have as IBD patients where we leave the clinic and we’re left to juggle these 100 things with our disease and not really left with with with much direction and how to do that and to have clinicians recognizing that problem and stepping into solve it for us and with us is just an incredible and I feel like truly, truly one in a million in this space.
Mara Shapiro 24:50
So next thing I know I’m working with them and helping to give them more patient insight and create some patient focused content while also kind of using my medical copywriting experience as well. So, in a sense, I’m really interested in GI psychology and really want to teach medical education in the future as well.
Amber Tresca 25:10
So we’ve talked a little bit about Instagram and how you’ve made some of these connections. And it’s a theme that I hear a lot. People finding patient advocacy groups, through social media, through Instagram, finding other patients that are like themselves, because all of our journeys are very unique. But sometimes we can find another patient that is similar enough to us that we can share those experiences and maybe feel not so alone.
Amber Tresca 25:37
Another thing that I think you and I have in common is our love of the outdoors. Tell me what are some of the things that you like to do? How do you manage it around your IBD and your other diagnoses? And do you have any tips for people who love the outdoors, but who are still trying to figure out how to merge that with the life that they’re living as a patient with chronic illness?
Mara Shapiro 25:58
Yeah, I’m so…prior to chronic illness life, I was a competitive indoor rock climber. I trained over 20 hours a week and traveled around the country to compete nationally. I also started to climb outdoors, with my team that I trained with and that sort of sparked my love for the outdoors kind of as a as an early teen. And it was really challenging to lose rock climbing and lose that part of my identity.
Mara Shapiro 26:23
As I you know, kept accumulating unfortunately, these diagnoses and so while I don’t rock climb anymore, I’ve really found and connected with the outdoors through hiking, kayaking, paddleboarding, skiing, snowboarding, and camping. The biggest thing I’ve learned with my outdoor hobbies and since IBD, and chronic illness came into the mix is moderation. Right? I’d love to go on a 10 mile hike, or like ski multiple days in a row, I do have this crazy wild dream to compete in a triathlon one day. I know that…
Amber Tresca 26:54
That’s not a wild dream, you can do it, you can make it happen.
Mara Shapiro 26:57
I think I will one day we’ll start with a sprint distance. That’s definitely where we’ll start. But this idea of moderation and kind of figuring out what’s what’s appropriate, what’s too much. Again, I’m always learning I’m constantly overdoing it. But that’s how we learn, you know, sort of kind of find ways to engage with all those activities while still trying to not put too much pressure on my body.
Mara Shapiro 27:20
But you know, so this idea of moderation means it doesn’t mean I can enjoy any of these activities at all. I just have to find, you know, new ways of doing that. So for me, I do love paddleboarding. But I love kayaking even more because I can sit down, right. So I found I could spend more time out on the lake when I’m sitting down. And I can when I’m standing up so it’s, it’s you know, those small things like that, that really make a difference.
Mara Shapiro 27:44
I also last year got a small RV, a small 20 foot travel trailer. And that was a true game changer, I would say it’s been a really fun and empowering way to enjoy the outdoors and escape reality a little bit, while still having the comforts that we need in life with IBD. My RV has a full bathroom in it. And I can’t tell you the joy that it brings me to pull over at a rest stop and just not have to go into these gross bathrooms or porta potties, I just climb out of my truck, fold down the steps, climb into my camper and use my own private clean toilet.
Mara Shapiro 28:22
So yeah, that’s been absolutely phenomenal for me, like I said, and also really empowering to kind of, you know, I go a lot by myself with with Morty, my dog, and just to feel that I can do something that previously I didn’t think I’d be able to do, again, has really, really paid off and made me a lot happier as a human being. But there’s no all or nothing with this lifestyle. And that’s kind of how I live my life. And especially with all my hobbies, there’s always a middle ground that you can find. And there’s always accommodations and ways to get things done. And that’s especially true for hobbies and recreation activities.
Mara Shapiro 29:02
And so my advice is to find your middle ground, get creative with doing that, ask for help and try new things. But really just allow yourself to enjoy life. Because I think a lot of times we can get in these ruts where we feel like we don’t deserve it. And I know I’ve struggled a lot with that and I’m here to tell you You definitely deserve it. You definitely deserve to find that self care activity that brings you so much joy and there are hobbies out there calling your name that you maybe haven’t tried since you were diagnosed and I’m telling you to go go try them and and let me know how you like them.
Amber Tresca 29:37
Cosigned. 100% down with that. So we’ve talked a lot about social media. You know, I’m laughing because your your dog Morty, we’ve talked about a few times. Morty has his own Instagram…
Mara Shapiro 29:49
Amber Tresca 29:50
So tell me about this. Tell me about Morty and tell me about Marty’s Instagram.
Mara Shapiro 29:53
I’ve loved dogs my whole life but I didn’t really know how much like a dog could change you until I got Morty. He’s three years old. And I’ve been thrilled to know him since he was three weeks old. And you can see by his Instagram, he’s always smiling. And that’s not just because I’m holding a piece of chicken jerky in front of the camera, which I, which I do, that’s how I get them to look at me. But…
Amber Tresca 30:16
Mara Shapiro 30:17
He is always smiling and he is always super happy. And that’s something that’s helped my mental health and in amazing, amazing ways, like, so very thankful for him and for dogs and pets and support animals everywhere. It’s it’s truly incredible. And yes, his Instagram is is also been a fun way for me to be funny, I think, I don’t know, especially in where I used to live in Southern California. That was like a thing. you’d meet people walking your dog and you’d be like, What’s your dog’s Instagram? And you like have street cred. If your dog has an Instagram, that’s how I met a lot of my friends out there was like our dogs on Insta, we’re Instagram friends.
Mara Shapiro 31:02
And I also have stickers of Morty that with his Instagram. So when we meet people, and when we meet little kids, because he loves kids and kids love him, and I’ll give them a sticker with Marty’s face on it. And so it’s kind of it’s become a fun little hobby for me and I, I’m not a photographer by any means. But I love taking photos of Morty. And it’s been really fun to get to share them. And I don’t really think my captions are all that funny. But they’re all in Marty’s point of view.
Amber Tresca 31:30
So well, you know what, I think you’re doing a very fine job. So So you know, you are a photographer. I think that’s we’re just gonna say that right now you are a photographer,
Mara Shapiro 31:39
Amber Tresca 31:40
…Dog photographer. First off, and then second off, I’m gonna need one of those stickers.
Mara Shapiro 31:45
Oh, yes. We have a sticker pack at this point we’ve got we’ve got four or five current stickers, I will definitely send them to you.
Amber Tresca 31:54
Oh my gosh.
Mara Shapiro 31:55
And if anyone wants to reach out to me on Instagram as well, I’ll likely be able to send you some as well.
Amber Tresca 32:01
Oh, my gosh
Mara Shapiro 32:02
You find me at a conference, especially for all of our GI doctors listening, you find me at a conference, not only will you get a CCYAN, sticker and button, but you can also get a Morty sticker.
Amber Tresca 32:12
So that’s something enticing, as if we didn’t already have enough reasons to seek you out at a conference and spend a few minutes with you. Now there’s merch involved.
Mara Shapiro 32:24
Amber Tresca 32:24
There’s swag involved. So Mara, thank you so much for coming on About IBD. I appreciate your time. I appreciate everything that you’ve been able to share. I hope the experience has been cathartic. I recognize that I’m asking you to tell me about some of the worst the worst things that have ever happened to you. But your story has value and has meaning and what you’re doing with Generation Patient and CCYAN and Trellis Health are going to impact a wide spectrum of patients. So take me through those some of your Instagram accounts before I let you go for real so that everybody can follow you.
Mara Shapiro 32:59
Yeah, well, thank you so much, Amber, again, for the opportunity. This has been really, really great. I’m looking forward to connecting more in the future as well. So on Instagram, you can find me at Mara J. Shapiro. That is my personal account, you can find Morty on Instagram at Morty, the red Corgi. And on Twitter, I’m also at Mara J. Shapiro, I’m trying to get into the Twitter sphere.
Amber Tresca 33:24
Oh, I will get you into the Twittersphere. So…
Mara Shapiro 33:26
[MUSIC: IBD Dance Party]
Amber Tresca 33:27
It’s coming. We’ll we’ll get you there because it is a very great space. And it’s a great space for GI, just I don’t know why, but it is. So again, thank you so much. It’s been really great connecting with you in a deeper way. And we’re going to share some stickers with one another. And thanks for being a friend of the pod.
Mara Shapiro 33:49
And of course, thank you so much
Amber Tresca 33:56
Hey super listener.
Amber Tresca 33:57
Thanks to Mara Shapiro for taking me through her journey. And explaining all the points along the way. Mental health is an important topic in IBD community, it it still doesn’t receive enough attention as we work to change that. I encourage you to continue to speak up, advocate for yourself or your loved ones, and support others in the IBD community.
Amber Tresca 34:19
Links to a written transcript, everyone’s social media handles and more information on the topics we discussed is in the show notes and on my episode 123 page on about ibd.com You can follow me Amber Tresca across all social media as About IBD.
Amber Tresca 34:37
Thanks for listening. And remember until next time, I want you to know more about IBD.
Amber Tresca 34:44
Mara Shapiro 35:02
I’m an excellent colonoscopy prepper. So very proud of that skill that I’ve accomplished.
Amber Tresca 35:12
You got to find the silver lining somewhere…
Mara Shapiro 35:14
You have to. I don’t know I’m, I’m weird. I look at the photos and I’m like, Yeah, I did good.