- February 5, 2020
A senior at Indiana University majoring in chronic illness advocacy and journalism, Sneha Dave is no stranger to #SpoonieLife. Diagnosed at the age of six with ulcerative colitis (UC), she is the founder of Health Advocacy Summit (HAS), an organization that hosts events in various cities around the country to provide education, insight, and community to an often underserved patient population affected by chronic illness: young adults transitioning from pediatric to adult care. HAS’s sister organization, the Crohn’s and Colitis Young Adults Network (CCYAN), connects the IBD youth community around the world. An advocate through and through, Sneha has spoken on Capitol Hill, featured nationally on C-SPAN, and contributed to U.S. News and World Report, Yahoo! News, Huffington Post, and others. In 2018, the We Are Family Foundation chose her as a Global Teen Leader through its Three Dot Dash program. Sneha has completed a research fellowship in health policy at Harvard T.H. Chan School of Public Health, where she is continuing research as an undergraduate in health care related to young adults. She has also interned at the Crohn’s and Colitis Foundation Headquarters and Pfizer Global Headquarters in health economics and outcomes research for Inflammation and Immunology. She created and chairs the first disability caucus in Indiana, and has served on the Democratic National Committee Disability Policy Subcommittee and Women’s March Disability Caucus. Sneha was awarded two academic fellowships with the Association of Health Care Journalists. She was previously a national policy fellow and now serves as the youngest director on the board for RespectAbility, a nonprofit fighting stigma and advancing opportunities for people with disabilities. Sneha has spoken at Stanford Medicine X; at the Harvard Youth and Public Health Summit; the National Academies of Science, Engineering, and Medicine; and other major avenues. She is also a national ambassador for the Invisible Disabilities Association and Lyfebulb. Sneha is passionate about advancing health care in rural communities, and is an ardent proponent for greater transparency in the patient advocacy space.
Key links mentioned in this episode:
Tune in as Sneha shares…
- how she was diagnosed with ulcerative colitis, and what treatment was like in the early stages of her illness
- that she used the restroom up to 20 times a day in her worst flares
- that she weighed about 60 lbs during her freshman year of high school
- that she had a full colectomy in her freshman year of college (removal of her large intestine and colon)
- that she now lives with a j-pouch and has chronic antibiotic-refractory pouchitis —and is still seeking a viable treatment option for this condition
- why bowel disease is difficult to discuss as a young adult
- background on 504 accommodations (disability accommodations for US high school students)
- how Sneha’s mom has been an advocate for her over the years — and how they’ve become closer as a result
- how she seeks accommodations for her illness, and the barriers she’s had to surmount to do so
- her journey to identifying as disabled
- why she started Health Advocacy Summit
- the urgent need for peer support among young women with chronic illness, in particular
- why young adults have such particular needs in terms of disability support, community, and access
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Lauren: Okay, guys, thank you so much for joining us. I am here today with an amazing young advocate who is still a college student, the founder of Health Advocacy Summit, and who also lives with invisible illnesses herself, Sneha Dave. Sneha, thank you so much for joining us.
Sneha: Yeah. Thanks so much. I’m really excited.
Lauren: It’s an absolute pleasure to have you and I’m excited for our listeners to learn more about Health Advocacy Summit. So let’s start at the very beginning, though, about you. Why don’t you tell us when and how you first realized that you had something going on physically? You were pretty young, right?
Sneha: Yeah. I was about five or six years old, and I started having a lot of diarrhea. I had a lot of blood in my stool, the very typical symptoms of what I would be diagnosed with later on — which is ulcerative colitis. So, around when I was six years old, I was given the formal diagnosis of ulcerative colitis. And throughout elementary school, I was put on a lot of steroids, and they had a lot of different treatment options. I was constantly trying to keep my weight up. My weight was always an issue for me, just trying to be as healthy as possible and have enough nutrients in my body. But during middle school, during sixth grade, for the first time, I had a huge, huge flare- up that lasted until the middle of of high school. During that time, I used the restroom sometimes up to 20 times a day, and I was on numerous pills. I did partial schooling of course at this time, because I was not healthy enough to go to school full-time.
I got really weak, to the point where my mom had to help me walk up the stairs by myself …
… and I used to be really, really active as a kid. But then as soon as middle school hit, that’s when everything became considerably more severe. During my freshman year of high school, I weighed about 60 pounds, and I used to go to the hospital every week to get infusions. Then I had the full colectomy surgery during the middle of my freshman year of college, and since then, I’ve had multiple other surgeries and I now live with a j-pouch. And unfortunately, I have
chronic antibiotic refractory pouchitis, which is something that obviously can’t be treated by antibiotics, so I’m on a host of biologics and am still looking for a viable treatment option.
Lauren: Now for our listeners who are tuning in and are, like … what’s a j-pouch, what’s a colectomy … can you give us the basics on what what that means and how that affects your lifestyle?
Sneha: Yeah, definitely. So colectomy surgery is basically when you get your entire large intestine removed. At least that was the case for me. Some people just get part of their colon removed, but I had to get my entire colon removed due to scar tissue and whatnot. And then they typically build an ostomy bag after your first surgery.
If you’re not familiar with an ostomy, it’s basically when a piece of your intestine sticks out of your stomach.
And you evacuate …
Lauren: That’s a nice way to put it! (laughs) We can talk about poop on the show. This is what we get into.
Sneha: Yeah, exactly. Yeah, no, no, that’s what it is. (laughs) You basically just poop from your stomach.
Lauren: Hey guys, that’s where everyone poops from, FYI! (laughs) You might not have an ostomy bag, but you poop from your stomach!
Sneha: Yeah, internally, yeah. That’s really funny. I was a high schooler at that time, and I was, like, what is this system? I would have a lot of leakages with my ostomy, so I would go to the nurse often and she’d give me this huge bathroom to change my ostomy. Because that kind of happened frequently when I had started going back into class. But a j-pouch — just to go back to your original question — is basically when they build your small intestine into the shape of a J. I’m not too sure of the exact biology of that, but now I don’t have an ostomy bag and I just poop normally.
Lauren: That’s great. So you didn’t end up having to live permanently with an ostomy bag because of the j-pouch.
Sneha: Yes. I’m very, very grateful. I’ve had a relatively great time with my j-pouch.
Lauren: It sounds like you were running to the nurse’s office, having leakages. How did that affect your social life as a kid, too, at that awkward age? Sort of coming into your own … and here you were having to worry about poop problems, basically. Did that affect your development socially, affect you negatively at all?
Sneha: Yeah, definitely. I think it took me a couple of years to realize how difficult it was for me at that time to make social connections. I mean, first of all, I was barely at school. So that did not help at all. But second of all, having to explain ulcerative colitis … Inflammatory Bowel Disease (IBD) in general is a little different than other conditions because it can often be very, very tricky to talk about with younger people, without them feeling uncomfortable, or them wanting to step away from the conversation. And so I think it was really hard because I was not able to explain my condition. I didn’t, at that time, feel confident enough to be able to tell people that I had to use the restroom a lot, and I had a lot of accidents.
It wasn’t until the last few years that I’ve really been able to open up and be completely confident in sharing about the impact of IBD.
The number of people that are diagnosed, and the holistic aspects of IBD … that it’s not just a bathroom disease, but there’s so many other factors that come with it.
Lauren: Absolutely. And it’s pretty amazing, because you obviously went from probably quite a fearful kid, right? Trying to figure things out. To now being an advocate across the country, and perhaps even internationally, right? We’re going to get into that. But before we get into your advocacy work, I was wondering if at any point along this journey to getting your j-pouch and figuring out what was going to work for you in terms of lifestyle … whether you needed a personal advocate at any point. Because obviously you’ve become your own advocate; you help advocate for others. Did you have someone with you in your appointments, trying to help you figure things out while you were working through all of this?
Sneha: Yeah, definitely. Especially when I was six years old … I have an incredible support system in my mom, my dad, and my older sister. My older sister, Priya, is actually in medical school now; she’s a second year medical student at Mount Sinai, and I’m really pushing for her to go into GI. She’s been a really, really incredible sister, having someone to be able to talk to about my anxiety levels and my stress when it comes with my illness. But I think most of all, my mom and my dad, especially my mom, were the best personal advocates. My mom, especially when I was young, would figure out all the insurance stuff. And my dad, too, was incredibly supportive. But my mom would be the one to help me go and initiate 504 plan meetings. And for those of you who don’t know what 504 plans are, it’s basically accommodations that are required in the US for high school students to get if they have a chronic illness.
And so my mom was huge in advocacy — not only at these doctors’ appointments and such, but also in the school system.
And even socially, she helped a lot as well.
Lauren: That’s really wonderful. And so you’ve maintained a close relationship with her, and it sounds like you guys have gotten closer because of this?
Sneha: Definitely. Absolutely.
Lauren: That’s really lovely to hear. And it’s really wonderful because you’re not the first person to talk about their mom being a really wonderful advocate for them. It’s great to hear that these illnesses haven’t torn families apart; they’ve actually brought them together in beautiful ways. So what about management day to day? What does that look like for you? Can you give us the gory details, if you will. What does it look like as you’re managing having to go to the bathroom, and your diet and exercise, lifestyle, everything. How do you make it work?
Sneha: I think the biggest thing for me is that my pouchitis comes in phases. So, for a couple of months, I can feel very normal and I can feel like I can do everything. And then for the next few months, I can be completely sick and have a complete lifestyle shift. And I think it’s especially hard right now, when I’m in college, and there’s already a lot of transition going on, to have that uncertainty. But at least for the past, I’ll just give you a snapshot of the past few months. I was actually on an infusion. And that infusion ended up causing my eosinophil count to rocket up. I’m not too sure … I’m not going to say the scientifics of that … but basically, it caused a lot of wheezing and difficulty in my breathing. I would wake up every couple of hours starting to wheeze, and the next morning, I’d have to go to class at 8am. It’s hard to explain to your professor that these things are going on when it happens almost every single day. And so you just end up going to class and having to tough it out for some classes. But I think other than that, just day to day, I always time when I use the restroom; I always try to go 10 minutes before class starts. And then I think, in terms of exercise … exercise has been really, really important in my life personally. It’s something that I try to keep consistent, even when I’m in a really severe flare-up. I’m really into climbing and I love high altitude stuff. Typically on Mondays and Wednesdays, no matter how I’m feeling, and no matter how much I think I’ll be able to do, I always make an effort to go bouldering at my rock climbing gym. Some days, I feel great.
And then other days, I can barely get up the wall without having to have an asthma attack.
But it’s still something that I’ve made a commitment to. And I think it’s really important, even when you are feeling down, to just at least try with your chronic illness to exercise.
Lauren: I think that’s really wonderful. So it sounds like you’re timing things; you were mentioning that with some classes you have to create accommodations and stuff. So are you communicating with your professors and with professionals around you and saying, like, “Hey, this is me. We might have to get accommodations for this kind of situation.”?
Sneha: Yeah, definitely. I’m registered with the Disability Student Services at my college, which is Indiana University. However, it’s really hard with some professors to be able to get adequate accommodations with them. Because some of the classes that I am in are in the hard sciences. So those professors tend to be a little bit less accommodating than, say, my anthropology professors or my journalism professors. So I think that’s a tough thing. It is not only the fact that you have accommodations, it’s often the courage to be able to go up and ask about them — which I think is a really, really tough part. Whether it’s right or wrong, you never want to feel like you’re the student that’s trying to ask for extra accommodations, even though you actually do need them. So I think that’s one thing to consider with anything — even asking for workplace accommodations — is that you have those rights, but sometimes it’s just having the courage to be able to talk about it. Which is the biggest barrier often, I think,
Lauren: Yeah, absolutely. I couldn’t agree more. And it’s interesting, this idea of communication as well. Because if there are going to be professors who are going to make it more difficult for you to actually create accommodations that you need, that says something about people’s tolerance levels and needing to be more open to these kinds of discussions, doesn’t it.
Sneha: Right, absolutely.
Lauren: So, in terms of finding balance for yourself as well, how are you managing? You’re timing things out … this is stuff that you have to be aware of all the time. Does it cause you anxiety? Or have you learned ways to manage that? Because it’s interesting how systemic this is for you; it’s not just a gastrointestinal issue, obviously, because you’ve gotten this issue with the antibiotics and that’s affecting your breathing and stuff. This affects every body system. And how you’re finding ways to make it work is really fascinating. I know everyone’s different, but I’m wondering if you’ve found ways to work through the rough patches?
Sneha: I think part of it is that I never … and this is not something that I want people to feel sad about … but I never have really remembered life without ulcerative colitis. Just growing up with it, and always having it, and me coming out of my big flare-up and realizing that I really don’t want this to be a barrier, and me wanting to do what I really want to do … is the biggest thing. I know that sounds really cliche. But I think it’s really, really important to be able to not compare yourself to people who are able-bodied, but to really just recognize that if you always account for your illness as something that’s stopping you, you’re never really going to be able to do what you actually want to do.
And you don’t have to do it at a hyper, incredible level. You don’t have to be a the best rock climber in the world.
You just have to go do it and just try it as much as you can. I think taking that first step, not waiting for tomorrow, not waiting for next week … is the biggest thing. And also planning out your day and accounting for, or just realizing, that sometimes you might just not be able to do everything that you thought you’d be able to do.
Lauren: So in terms of identity, does that mean that you’ve always identified as disabled … and has that affected the way you see yourself as well?
Sneha: Yes, that’s a really interesting question for me, actually. Because I didn’t recognize that I had a disability until my freshman year of college. Before that, I always felt like: I have a chronic illness, it’s cyclical …
Lauren: That it was just you. That was your normal.
Sneha: Right. It felt very, very normal. And so I think that recognizing that I’m part of the disability community has played a completely different role, in terms of how I view advocacy now. Because I think the chronic illness space, until recently, hasn’t been as vocal or as prominent for me, at least. Or at least for me to be able to find. And so what has been really interesting is actually being able to have the disability community, but then find my more specific community within the chronic illness community.
Lauren: Absolutely. Well, let’s get into your work. Tell us about Health Advocacy Summit and how that was born out of your experience.
Sneha: So after I kind of came out of this severe period of illness, I was really struggling, both socially and just figuring out how to live like a normal person would live — because I had been sheltered for a few years during that critical developmental period from middle school to high school. And so I realized for adolescents and young adults who are going through severe illnesses or cyclical illnesses, that there’s just not enough support, and there’s not enough connections to resources. If I did not have my mom, I would not have known about 504 plans — because that’s not something that my school openly talked about or had offered to me until they were about to expel me, really, for missing so much school.
So I decided to just bring together young adults in Indiana during my freshman year of college.
Because I wanted to find the community, and I really wanted an in-person community. So I brought together about 14 attendees in Indiana, and we just called it a summit. And for the first summit, we had vocational rehabilitation counselors talk about navigating the education system and navigating the workplace … how to even go about initiating these really daunting conversations. And then we had a health lobbyist talk about how he’s worked to eliminate Step Therapy or Fail First in the state of Indiana, making it easier for our attendees and for our patient community to get access to medications when they need them. And then we also had psychologists come in and open up a discussion about overcoming the emotional barriers of living with an invisible condition. And that session was really interesting to me, because I, personally, had never really addressed the mental health aspect of chronic illness until that session for the first time. And I noticed that for many of the attendees that came, a lot of them were from rural communities and they had also never really been able to open up and talk about their anxiety and depression and isolation that came along with their disease — until they were sitting in a room with other people talking about it. So it was really, really cool, and that’s still has been one of my favorite sessions. And then we also had a testimonial speaker who has had multiple conditions. And she talked about how exactly she was able to navigate college, entering college and everything. So that was the first Summit. And then we built a website, and we got inquiries from other places to build a Summit. So we expanded in 2018 to south Texas, quite literally on the border between Mexico and Texas in the Rio Grande Valley. We host these Summits annually once they’re in that state. That Summit has been really interesting, because the cultural perceptions of chronic disease are very, very different from, let’s say Indiana, to our other locations. In 2018, we also expanded to North Carolina. And then in 2019, we expanded to San Francisco, California, and in 2020 we’ll be in 6 states. So we’ve been growing pretty fast. What’s really cool is that we’re led entirely by young adults with chronic illnesses.
Lauren: I think that’s so wonderful, and it’s really exciting that you’re growing so fast as well. And it’s interesting that you use the word “invisible” … obviously that’s why we’re talking today. But that you’re getting a bunch of young people in a room together, probably seeing people who are just like them with these invisible and chronic conditions. It must be very inspiring for everyone to be in the room and to not only have community, but also get support.
Sneha: Yeah, definitely. I think it’s really amazing, because if you were to see most of the people just walking around, you wouldn’t ever be able to connect with them at a level that you are at the Summit.
Because you just really can’t tell what a lot of the attendees are going through.
It’s been really amazing for me, too, just personally, to be able to find that community that’s in Indiana — and not have to go to California or these bigger places to have that in-person support. So, I’m really passionate about bringing the Summit and bringing more support to rural communities. Because Indiana obviously has a lot of very rural areas, so that’s been really, really important to me personally.
Lauren: Yeah. And you’ve been receiving grants, as well, to continue this work.
Sneha: Yeah! We’ve been very, very grateful to the Cystic Fibrosis Foundation who are continuing to support us. And we’re also very grateful to the Helmsley Charitable Trust, which has been incredible in providing support and connecting us to other people that are working in that transition space as well.
Lauren: That’s really wonderful. So you’re finding these larger organizations that are wanting to help you with what is essentially a grassroots movement that’s growing and growing, right. And that’s so promising for so many young people who are living with these kinds of illnesses. I’m wondering if there are any examples that came to light in past Summits, or in your own experience, of people who have been in situations where nobody believed that they were ill, and they had to justify what was going on. I’m sure you’ve heard some really interesting stories.
Sneha: Yeah, yeah. That’s probably the toughest and the most frustrating aspect. Most of the the attendees that come are women and the stories that they tell in terms of how sick they had to get before they were able to get the proper testing they needed, or before they were able to get access to the medications that they needed when they needed them … has been really, really enlightening, I think for me personally. And it shows me how much effort and how much work there is still for us as people with invisible chronic illness to have to advocate and share our journeys and our disease experiences.
Because I truly believe that, especially young women, don’t get believed as much because they maybe don’t have enough experience in these types of situations.
Lauren: I’m wondering in terms of … you mentioned that it’s mainly women who come to the Summits. Do you think that’s because there are more women who are sick, or because women are seeking community more?
Sneha: I think it’s a little bit of both. I think men in general may tend to not want to openly discuss their illness as much. We’ve had some more in the past come, and that’s been really encouraging. But I think it might just be that women tend to be a little bit more okay with sharing about their chronic illness, and being vulnerable. But I also feel like there’s a stronger sense of urgency in terms of advocacy and self-advocacy — because there’s lots of articles and whatnot about women not being believed as much with their illness. So I think for them and for us, it’s really important. And really, there is a sense of urgency and the need for learning advocacy skills and for having this peer support community.
Lauren: Absolutely. I couldn’t agree with you more. And I’m so glad that people are picking up on this disparity in care. And trying to address the gaps — which it sounds like you guys are doing by providing advice and information and education to people who are coming to the Summits. That’s really wonderful. So what have you learned about the health system? And actually, not just the health system, but systems like our school systems and areas in which you’ve moved — and have had to find your way through the advocacy platforms available to you? In what way have these structures in institutions worked? And in what ways are you finding that there are gaps that need to be filled?
Sneha: I think the one that comes to my mind most quickly is about the lack of proper transition from pediatric to adult care. This is a topic that’s coming up more, because more young adults are living longer with our chronic illnesses — because for a long time, we weren’t technically supposed to live as long when we were diagnosed so young.
So now our health system is confused as to how to properly move our population from pediatric to adult care.
I think the biggest thing is when we’re handed off from our pediatric GI doctor or pediatric pulmonologist, we’re not properly transferred to adult care. And that can pose a lot of issues in terms of continuity of care, and not really knowing your place within the healthcare system — and just getting lost. For example, in Canada, there’s kind of a hard cutoff of when you turn 18 you have to be sent to an adult hospital. Whereas in the US, it’s a little bit more murky in terms of what age we transition, what age we start becoming more independent with our own care. Since I was six years old, I never dealt with insurance stuff at all. I never really was my own advocate at that young age. But as I went to college, and I turned 18, I had to do the insurance calls by myself and I had to start filling my prescriptions — which I had no idea how to do until I came to college, because I had never done that before. And so I think just this idea that doctors, social workers, the whole care team, needs to prepare young adults for the proper transition and transfer to the adult healthcare system. And ensure that there is this continuity so that young adults don’t just fall off at a certain age. Because then there’s so much happening in our lives. We’re going to college, we’re starting a new job. We’re moving here and there. And if we don’t have that proper transfer, there can be a huge gap in terms of proper care.
Lauren: Yeah, I think that’s a really well-made point. Because it’s not something that we’re talking about a lot. And as issues of systemic bias are coming to light, it’s a really excellent point to be made — that we’re forgetting also about some of these very important patient populations in the mix. And it’s important to keep that conversation alive. Not just the conversation, perhaps, about women needing more access to targeted care, and diagnoses and treatment, etc. But also, that there are these patients, as you say, who are in that weird limbo phase, and who might need extra assistance and might need the education to learn how to become their own advocates — and how to fill out those forms. It’s very interesting, because I’m in my 30s, and I have conversations with my friends about how we wish there’d been a college course about how to just do your taxes, really basic life skills that nobody really teaches you. You have to learn it on your own. But it’s an extra hurdle when you’re someone who has to fill up disability forms, or ask for accommodations, and navigate the healthcare system — as someone who’s a frequent user as well.
Sneha: Right. And I think the other thing is, too, that right now, in adolescence and in early young adulthood, our brains are going through so much change, too. Sometimes, we might not be able to make the proper decisions for certain things; we have a lot of neurobiological changes that are happening. And if we aren’t taken care of, we’re not going to necessarily be the ones to be like, I need to make this appointment right now. Because our responsibility and our understanding might not be where it is with an adult. So I think that’s another thing that needs to be accounted for, that our brains aren’t fully developed and so we can’t just expect young adults and adolescents to automatically make these appointments. And we can’t just put the onus on them all at once.
Lauren: Right. And that if the healthcare system is gonna make us jump through hoops, they have to also give us instructions! And access.
Sneha: Right, absolutely. Access is huge. At Health Advocacy Summit, we don’t accept money from the industry, mainly because most of the attendees that come have had some form of issue with access, including myself.
And so until we can’t get the basic medications we need when we need them, we just can’t work with the industry.
Lauren: Absolutely. Well, and you had mentioned that you were about to fail out of school, and it wasn’t until you were going to fail out that you had to do something about that, and that the system was rigged against you. And that’s the educational system being rigged against you really.
Sneha: Right. And I should say, my school system did provide really good support in terms of tutors after I got the 504 plan. But until then, I was just missing so much, they had never questioned anything about it. But yeah … I will say one small plug … I’m not really sure how I did this until now, but I was able to graduate still in the top 20 of my class of 600 people in high school, too.
Lauren: That’s amazing. That’s a huge achievement. And it’s no surprise, because you’re obviously someone who is out there achieving things! You not only graduated high school, but you also started an advocacy platform that’s helping hundreds and hundreds of people. That’s no small feat to be done while you’re in high school. So, what about the role of privilege? This is a question I like to ask everyone, because we know that there are disparities in the system. There’s medical bias at play. And I’m wondering if privilege has played a role at all in your experience in the medical system? Whether that’s as someone who identifies as female, as a woman of color … how has that affected your experience?
Sneha: I think there’s two sides to this. I think the first is that I have been really lucky because both my parents are very health-literate, so they were able to guide me through the health care system and I didn’t have to figure things out organically by myself.
But on the other side of it, I think being a woman, I feel like I had to become really sick until there was action taken for my symptoms.
Just to give you an example … last year, I was starting to have symptoms again of pouchitis. I had visited my doctor, but it wasn’t until a few months later, when I said, “I really, really need to be checked out again. These symptoms cannot be dismissed anymore,” is when they ordered the pouch-oscopy and I got a score of 6 out of 6 on inflammation levels. So I had really, really bad inflammation. And it wasn’t until I really, really pushed them into saying that something needs to be done, because my lifestyle is now incredibly affected … it’s not just mildly affected, it’s incredibly affected … that I was able to initiate that care. I can’t say for sure whether that’s because I identify as a woman, but I feel like it definitely, probably had a part in it. I see those stories a lot with the young adults that I work with.
Lauren: Well, and I imagine that there possibly could have been an age bias at play there too, right. We’re not just talking … here’s a woman … but it’s a young woman, too.
Sneha: Also leading Health Advocacy Summit as a young woman has also posed its own challenges as well.
Sneha: I just think that there needs to be a lot of work in general done with advocacy for young women, especially with patient advocacy for young women. That’s just a whole other area that needs to be tapped into more.
Lauren: I’m really glad you say that, because it’s interesting to me how inclusive the disability community is, in ways that many other communities may not necessarily be for a lot of people. And the idea that people in the disability community aren’t just thinking about themselves, they’re actually thinking about the bigger picture, too, is a really important point to be made, I think.
Lauren: So I like to round up my interviews with some Top Three Lists. And I’m wondering if you’ve got some top three tips … you already went into a couple of tips, you were mentioning, for people who may be thinking something might be up with their bodies. Or maybe live with chronic illness and don’t know how to navigate the system. What would you recommend to your fellow Spoonies … top three tips to make it work?
Sneha: I’d say the first is have some set time just for yourself. For me, that’s climbing. But for you, that can be listening to music, or reading a book, and just not letting anyone else interfere with that time. You can just do one hour every other day, or one hour every couple of days, depending on your schedule and your needs. But I think that’s really, really important to have that time for self-reflection, and to get your life in order — because I know many people with chronic illnesses have a billion other things that they have to do. That’s the first tip, to just have that time for yourself. And then the second tip is, share your story. I think that’s really awesome, but I think it’s also really great to be able to empower others to share their story. I think that’s really fulfilling as well. I guess that’s more of a macro tip, but find other people, and if you have had the opportunity to share your story, I think it’s incredible to be able to lift other people up and promote their platforms as well.
Because it is very therapeutic to be able to share your experiences with others.
And then I think the third one is, probably for me, what’s been really helpful is expressing gratitude for the people around me. I think, sometimes when you’re caught up in … oh, my mom should have done this … or, I feel like I’ve been discounted in this situation because of my chronic illness … I think if you turn that around into something a little bit more positive … you might still have been discounted, but you’re still trying to see the positive in a particular situation. For example with me, I’ve had unfair exam settings where my professor has not accommodated me in the right way. And instead of just getting really frustrated in the moment, I took a step back and evaluated what I do have to be grateful for — and then afterward, I spoke up. Don’t become charged in the moment, I guess, is one of the tips … because, unfortunately, people just don’t know your experiences, and they don’t recognize the importance of a lot of the accommodations and whatnot that are necessary. Just being able to explain and be very diplomatic and conscious of how you’re relaying your message … is also something.
Lauren: I think that’s really remarkable that you bring that up, because in terms of what we’ve been discussing, about this very important patient population that you’re really targeting with your work, of patients who are going from pediatric to adult care, it’s a great life lesson that you learn about not being reactionary. But it’s very important, obviously, for getting your message across — particularly when you’re a patient, particularly when you’re in a population that is in some way, perhaps, underserved. To really find a way to create your messaging in a way that it’s palatable for other people. And this is an interesting point for people who are able-bodied to understand as well. That when they’re hearing from patients, sometimes it’s after they’ve thought it through. And that’s either why they’re so mature, or it’s why they’re upset at this point — because imagine how much more upset they would have been if they had just reacted off the bat.
Sneha: Right. And I think it’s a thing, too … there’s going to be so many instances, unfortunately, where people are just not going to understand, and to not get frustrated immediately is something that I think I have to tell myself every single time. Because there’s gonna be so many of these instances. But it’s also a really great learning lesson for the person, and hopefully you’re able to get your message across in a way that people are able to really understand where you’re coming from — and then react in in the appropriate way.
Lauren: Absolutely. So one last Top Three List … I’m wondering if you have any lifestyle changes that you’ve accommodated in your lifestyle, to make things work around your illness, that you maybe sometimes … top three … cheat on, or maybe are guilty pleasures, secret indulgences … or even a comfort activity when you have a flare-up. Something that you’re completely unwilling to compromise on, despite or because of your illness.
Sneha: It’s a really interesting one. I used to cheat, I’ll be honest, all the time on not taking medications, when I was younger. That was when I actually had to take real pills. But now I take infusions, so it’s a little bit harder to cheat on in that arena! But I think one of the big things for me is that when I am really sick and when I feel kind of overwhelmed — because when I’m a little bit sicker, I tend to not respond to people as fast, or at all sometimes — I just sometimes will completely get away from my computer, and be, like, “I was on vacation … “ or something. When I was really not on vacation, but just taking a few days.
I think that’s one of the big things — that I just tend to put people away for a while and just focus on myself and focus on my time.
Lauren: Without fully isolating, it sounds like. You give yourself the time you need, but it doesn’t mean that you’re cutting yourself off from people entirely.
Sneha: Right. Absolutely. So that’s one of the things. And then the other thing is definitely climbing for me. That’s something that might not always be the best thing when I’ve only gotten a few hours of sleep or a couple hours of sleep. It might be better to actually just relax and rest my body. But I feel like for me, that’s such a huge part of my life. So I’m definitely not willing to compromise on climbing. Probably the third thing, and a little bit harder for most people, is cutting back on sugar. But especially when I’m in a flare and just not feeling well, I tend to eat a lot of sugar. And sugar is inflammatory, so it’s probably not the best thing.
Lauren: But it’s comforting! Sneha, can you tell everyone where they can find Health Advocacy Summit and your work?
Sneha: Yes, you can visit HealthAdvocacySummit.org and we’re on all social media as well. So you can find us on Instagram, Twitter and Facebook.
Lauren: Fantastic. Is there anything else you’d like to add for everyone tuning in?
Sneha: With Health Advocacy Summit, we focus very much on the Summits. So we have six Summits, but we also now have year-long programming. One of the programs that we do is called the Crohn’s and Colitis Young Adults Network. We facilitate an international fellowship program for young adults with specifically Inflammatory Bowel Disease. We give them the opportunity to have this peer support network, which is all virtual. They also have monthly trading, so they hear from policy experts, social media experts, people who focus on nutrition and IBD, and researchers. They have those monthly advocacy training calls. And then they publish monthly content for our website. This year, with the support of the Helmsley Charitable Trust, we’re able to fly them all to Digestive Disease Week, in early May in Chicago, which is really cool. We have fellows from the UK, India, and all across the US this year. This is our second year of the program.
And it’s been really incredible seeing it grow, and seeing the interest in actually training the next generation of patients and the next generation of patient advocates.
Lauren: That’s really exciting, Sneha. I congratulate you on doing all of this. It’s just amazing the work you’re doing — while you’re still at college!
Sneha: Yeah, definitely. And I think one thing that’s also really important to add is that I have a really, really incredible team that I work with.
Lauren: And it sounds like this isn’t a network that’s just for these young adults, but it’s also for parents who have children who are living with chronic illness. So It really touches so many individuals. And I wish you the best of luck as you continue to grow the organization. It’s really exciting the work you’re doing.
Sneha: Thank you so much.
Lauren: It’s been a pleasure having you on.