Aswani Omprakash
New York City, New York
“There was no readily-available information about how this was affecting people with my disease.
I’m considered immunocompromised.
I am on immunomodulators, a couple of them. So, it was like, “How is this going to affect me? Am I more susceptible to this virus or am I not?”
Ryan Roach: Could you tell us a bit about yourself and how you identify?
Tina Aswani Omprakash: My name is Tina and I identify as she/hers. I am a Crohn’s patient advocate. I’ve been living with Crohn’s for nearly fifteen years now, and I’ve had an ostomy bag for almost nine of those years. I’ve had over 20 surgeries related to Crohn’s disease, and I’ve accumulated too many diagnoses along the way as well.
So I do a lot of patient advocacy work around digestive diseases, because I have a few of them as well as other autoimmune conditions that come secondary to my Crohn’s disease. I do a lot of patient education work. I work with a lot of nonprofits and a little bit with pharma, and some digital health companies as well. I just want to make sure that we have a seat at the table as minorities, making sure our voices are heard, because for so many different disease areas, including mine, there aren’t as many minorities represented who have strong voices. So I like to make sure my voice is heard on that front.
RR: What has your experience been like during the pandemic?
TAO: So my experience in the pandemic has been interesting because I think I’ve gone through, like, a different wave of thoughts. Initially, it was tons of anxiety. Also, the unknown of what’s going to happen. Here was an illness that I didn’t have that I had to stay home for now. Or I didn’t know that, whether or not I had, right? Because we didn’t know if we could be carriers or not. There was so little known at the time back in March.
Being a Master’s in Public Health student, I had been hearing about this virus since January, but we’ve been hearing about so many viruses over the years: Ebola, MERS, SARS, all these kinds of viruses and they’ve never really quite made it here. Or, if they have, they’ve been sort of shut down very quickly. So I had those thoughts in my mind, but then I had other thoughts in my mind, like, “This is highly transmittable.” We don’t quite have the leadership federally we’ve had in the past. So, all of that was anxiety-producing.
But for me, my experience specifically was – I had just traveled to Vienna, Austria, to speak at a conference just a few weeks before. And the weekend prior to New York City starting to shut down, I was in Boston speaking at an event. So I was just like, “Wait a second,” you know, “I’ve been on Amtrak, I’ve been on all these flights internationally and domestically the last couple of months. Have I had this? Do I know if I transmitted this?” That was another source of anxiety, like, was I carrying this? So, it was sort of two-fold, I think.
As we started to get more and more information, I think, on some levels, the anxiety started to grow a little bit because there was no information. There was no readily-available information about how this was affecting people with my disease. I’m considered immunocompromised. I am on immunomodulators, a couple of them. So, it was like, “How is this going to affect me? Am I more susceptible to this virus or am I not?”
So, there were a lot of questions sort of percolating in my mind and worries about my husband needing to go back to work or how long he’d even be able to stay at home. Worries about my school reopening without thinking things through. There were so many things on my mind, like I wasn’t even sleeping at night because I was so tense during that time and New York City was just exploding in numbers. And that was also anxiety-producing. So, just all around this one big bubble of anxiety, I would say.
RR: What has your experience been like coping during the pandemic?
TAO: Early on, when I had come back from Boston, I was just like, “You know what, Tina, you’re shutting everything down.” New York City took another week to start shutting down. I contacted my doctor and spoke to my therapist about it. I was saying back then this is not just going to be a two-week thing, or one month or two-month thing. This is going to be a year or two.
Back then, my doctors were, sort of, like, “Tina, you need to hunker down; you’re on a lot of this kind of medication.” So I actually, in terms of coping, I went at it proactively. I had to make sure that I was taking care of my health and my husband’s health. But also just making sure I self-isolated, you know, for the good of other people as well. So, I was very proactive in that regard. As far as emotionally coping goes, I think this was really hard, but again I went at it proactively.
I started talking to my therapist about what this is going to look like, some of my fears and anxieties. I think what we came to terms with is that this is sort of similar to some of the experiences I have had in the past, where in my twenties and a good chunk of my thirties even, I’ve spent a lot of my life, sort of, in and out of hospitals. I’ve been at home. This isn’t that different, to be completely honest with you. It’s just now everybody’s sort of on that wavelength where they’re like, “Oh my God, this a worldwide public health crisis.”
Whereas before, it was just me, sort of home, and some other people maybe on social media. Now people talk about it. Back then, nobody was thinking about how a lot of us young people have chronic illnesses in our home. Recovering or unable to work, unable to go to school, what have you. So I think when I started to equate it to that, it helped on some level, but on some level, it was, like, “Why am I home for a condition I don’t have when I feel okay? Like, these are precious years of my life where I could be out doing things I love because I’ve spent so much of my life at home.”
So it’s been this, sort of, juggle between the two. Where I’m thankful that I haven’t had COVID yet, but I’m also kind of frustrated that people won’t wear a mask, people won’t take the precautions, and that I have to stay home and continue to protect myself because people can’t do the basic things that we need them to do.
RR: What has your day-to-day been like during the pandemic?
TAO: My day-to-day has changed completely. Initially, I would have had a lot of doctors’ appointments. A lot of specialists’ appointments, whether it’s acupuncture, which helps to maintain my wellness or certain forms of physical therapy that help to keep me strong. So a lot of that changed very quickly because I didn’t want to get infected. A lot of offices shut down. A lot of offices were needed to be used for excess COVID patients in New York City. So, my care completely changed.
And I think I got sicker during the pandemic, ‘cause right before the pandemic, I found out I had a herniated disc. I needed physical therapy for that. I had busted my ankle. I needed physical therapy for that. So these things were kind of left to the wayside. I did notice my stomach issues getting worse. That tends to happen with stress.
So my everyday life changed because I wasn’t able to maintain my wellness the same way that I had been doing proactively before. I was out and about less; I was moving a lot less. That took a toll on my stomach as well. A lot of my bowel symptoms started to act up, I think, with the lack of movement because I’m a pretty active person.
My classes went virtual. A lot more Zoom visits with doctors. Not just Zoom but all kinds of telehealth platforms. Zoom calls with friends and Zoom lectures for school. I just felt like my whole life suddenly went online, and I felt like a lot of my life was online to begin with because of my social media work. But I enjoyed, sort of, the interactions that I had with my friends and even with my doctors and physical therapists outside of my home. I enjoyed some of those interactions, and suddenly all of that was gone.
So my day-to-day really kind of went up in flames, and I had to reorganize the way that I did things. So I started to cook more at home rather than picking up on the go. My husband was home, and he still is, at least through the end of the year. So that’s been an interesting dynamic because we live in a small one-bedroom apartment in Manhattan, so it’s very hard to do our work and live in a small space. There are sort of no boundaries between what work is and what is time to enjoy ourselves or what rest looks like. Everything’s just one big mish-mosh, so to speak.
RR: What has your experience been like accessing information about COVID-19 and the pandemic?
TAO: There is so much information, and the information keeps changing. So initially I, along with so many other patients who have inflammatory bowel diseases like I do, we’re considered more susceptible to these things because we’re on certain medications. But then all that information changed.
Suddenly it was, “Okay, if you’re on biological agents, actually there might be a protective aspect of this. But if you’re on steroids, that might not be so protective.” And then there were certain steroids that were protective and being used in treatment. It was just so all over the place.
Even the guidance around mask wearing. I wear my mask no matter what. Like, I’ve gotten the flu on a flight, so I wear my mask. I have been wearing it since February because I was afraid of exactly this. I’m like, “This is a SARS-type virus, it’s got to be respiratory,” even though that wasn’t the guidance we were getting from Fauci and the government.
I just feel like the guidance has changed so many times, that that also throws people off. That’s why we’re having the protests around masks, and all these other things, because people don’t know what to believe. I think we have to make our own decisions. I think we have to understand what we are being told by scientists, how serious this is, and we have to take the information, sift through it, and not just be like, “Oh, this is convenient for me, so this is what I’m going to do.” Sift through that information, use your common sense.
I mean, it’s very obvious if we’re having Black Lives Matter protests in New York City, yet our numbers are still low because they’re constantly handing out masks; clearly, the masks are working. Let’s use our common sense and wear them. I think that’s what needs to happen. There’s a lot of misinformation. There’s a lot of information constantly changing for us. We need to use our common sense and be like, “Clearly something is working here, so let’s just do it!”
RR: Touching on the topic of information, in recent years, especially during this pandemic, there has been a rise in disabled, chronically ill, immunocompromised and neurodiverse individuals creating and taking up space by sharing their stories across media platforms on the internet. Sharing these stories have become a form of advocacy for many with the goal of creating change. Sometimes these stories are solely personal experiences that may contradict health or medical research. How do you believe we can get an appropriate understanding on disability, chronic illness and neurodiversity when information is so accessible in so many different ways but sometimes this information is based on personal experiences rather than research?
TAO: Absolutely, so just to clarify, I think it’s extremely important to share personal experiences. But I think when we start counting those personal experiences with things that we think are scientific about our disease journeys, that’s when the misinformation is coming in. We think we had one kind of surgery, we label it as such when it was actually a different kind of surgery, and we’re posting information about that surgery that might scare somebody else.
But it’s really important, with that said, to share that personal experience, but maybe not share the specifics around what exactly that surgery was especially if you’re not 100% sure. I think if I were to sit down and encourage people who are sharing their stories, I would like to continue to encourage them to share their stories. I would just tell them to be careful about the language that they’re using, about their audience, bringing science into it, and being sure that that’s the science around it if they’re going to bring that in.
I think it’s important to sort of say this is my personal experience. So, I think we have to be really careful how we’re phrasing things and how we’re portraying things as well.
RR: During the pandemic, the government and media have deemed the chronically ill, disabled, and immunocompromised communities as “vulnerable.” What are your thoughts on the terminology of “vulnerable”?
TAO: I don’t love the term “vulnerable.” I think that makes us look weak. It’s one thing if you say “medically vulnerable,” because at least that couches it a teeny bit, but I still don’t love it. I think it implies weakness. I think the chronically ill and disabled population is anything but weak.
I think for us to survive, it’s been survival of the fittest for so many of us. We’re in that survival mode every single day. I don’t think that denotes or connotes weakness whatsoever, and so I really honestly hate it when they refer to us as vulnerable. I would like to see it referred to as perhaps we might be more susceptible to the virus, or that we should be referred to as “immunocompromised” potentially if our immune systems are compromised because of certain medications or because of our conditions.
But I don’t, personally, love the use of “vulnerable.” I think it’s condescending in many ways. It implies weakness. Also, I don’t know, it just makes us feel like, “Okay, because I’m vulnerable, I shouldn’t have that much of a voice,” or, “I’m not being represented or heard.” But if I’m more susceptible or, if I’m immunocompromised, that’s just a fact of being, whereas “vulnerable” implies judgment.
RR: What are your thoughts on how the government and the media have been treating these populations they have deemed “vulnerable”?
TAO: You know it’s interesting that you ask about how the government and media are portraying this. I personally feel like we’re being looked down upon. That it’s almost, like, “Oh so we have to stay in to protect this population? Um... you know, maybe they should just stay in?” I’m not saying we’re not staying in,
because we are. Almost everybody I know who’s really sick has been working extra hard to protect themselves even if they are going out. There’s a lot of anxiety laced into that.
I would just like to see more respect towards us, especially in the beginning. In March and April, when I was hearing about how Italy and Spain and Iran were treating patients like myself as just disposable because they just assumed we were going to die anyway from the virus. That hit me hard, and I think that was one of the reasons why I was having so much anxiety around this virus. “If I end up in the hospital, are they just going to dispose of me also?” And that’s kind of how it felt, you know, even with the government and the media. “Are they just going to dispose of us?”
RR: During the pandemic, society has been able to accommodate the general public with accommodations, like work from home, that have been asked for previously by the disabled, chronically ill, immunocompromised, and neurodiverse communities, yet these communities were typically denied. Why do you think society has been able to accommodate the general public when these accommodations have been denied previously?
TAO: That’s a fantastic question. I think this is a big point of frustration for the disability community is, “How come we weren’t listened to and heard before?” I think, unfortunately, this is the power in the numbers. When it’s the whole world involved, of course they’re going to switch to virtual.
Let’s say the disability community in one school might be, I don’t know, depending on the size of the school, if it’s one, two, five percent of the school’s population. Obviously, they’re not taking that seriously. Which isn’t fair to us. I think there should be accommodations throughout.
I know my school, this semester that’s starting in the fall, they’re saying, you know, there’s a chance we might open up for in-person classes later on in the semester. “Let’s see how the fall goes. If we do, we will offer virtual to anyone who doesn’t feel comfortable coming in.” And my school, to be fair, is very good about disability accommodations. But the fact that they’re offering this and never really quite offered virtual before. Did it sting a little bit? Sure it did.
I’m trying to look at this as positively as possible where people are now recognizing how important this is, and people are now recognizing the considerations that we’ve brought up for years. That we need to be considered; that we have these technologies and that they need to make those accommodations for us. So I’m hopeful that this has been an eye-opener for both telehealth, as well as colleges and universities. To really understand that we need to accommodate everybody, this is not just a minority issue or disability issue. This is much larger than that, and perhaps this is something we need to do moving forward.
I think this is about advocacy now. I think, now, the doors, the floodgates have opened. People get it. If we continue to advocate for it, it will continue in
that form. But if we don’t keep pushing for it, we’re going to go back to our old ways, which I don’t want to do. So I say we keep moving forward with that kind of advocacy.
RR: Over the past few months, media correspondents and politicians have continuously talked about “vulnerable” populations, yet rarely invite anyone from these communities to represent themselves or their communities. Why do you think that is?
TAO: You know, it’s funny that you ask that because I feel that way about not just about disabilities, but being a woman of color. Why are white people leading panels on diversity? Like, no offense to white people, you know I love them. But we’re the ones who are living this existence, whether it’s disabilities, whether it’s colored existence, and every single minority faces their own different issues. So, we should have a seat at the table for disabilities, for somebody of my descent, South Asian, for somebody who’s African American, for somebody who’s Latinx, like we need to have everybody at that table.
I feel like for decades, if not centuries, we’ve had old white men making our decisions for us. You know, pardon my language, the way I’m talking about it, but we really have had older white men making these decisions on our behalf, and they don’t understand what it’s like to live a day in our lives. And is it frustrating? Absolutely.
I think we need to be more inclusive of disabilities, of different kinds of minorities, the LGBTQ community. We’re all facing different experiences. Some of them are intersections of experiences, and those intersections need to be covered as well. So I really would like to see more of that. I hope that with the pandemic and with the riots and protests we had back in June, throughout the summer here in New York, things start to shift and start to change.
RR: Moving forward, how would you like to see the government and society start responding to the COVID-19 pandemic?
TAO: Mask wearing has to be required. I think that the education around it needs to be reframed as this is a public health issue. This is not a political issue. And we need to bring to light how this is a public health issue and not a political one.
I think we need to stay grounded in humility, in kindness, in compassion and push those values rather than hate – rather than pushing forward some of the hate rhetoric that I’ve been hearing, which is just so jarring towards the disability community, towards minority communities. It’s just so jarring on so many levels, and I think we need to bring that kindness back. We need to bring that compassion and that empathy back towards humankind, and
once we do that, that will automatically bring back those public health concerns. “Oh, I should wear my mask, because I care about my neighbor, because I care about the next person whose mother might have heart disease, or diabetes, or be more at risk, or whose child might be more at risk.” You know, once we start instilling that kindness and that concern, I think people will automatically start wearing those masks. And I think that comes from leadership. So, I think that mask-wearing is number one.
I also think that we need to start pushing science. We are doing all the research in clinical trials for COVID-19 in terms of treatment – in terms of things that will lessen, sort of, the harmful effects of the inflammatory or cytokine scoring caused by COVID-19. Yes, we’re doing all that. But I think we need good leadership to push forward that science. We need to allow public health experts and epidemiologists to speak about what they’re seeing in some of these clinical trials.
Something that I’ve been seeing on LinkedIn and on social media is some of these health care companies, their employees are coming forward, some of these pharma companies’ employees are going forward and taking the COVID vaccine first. What an example that’s setting, right? You know, their companies might be creating these clinical trials, these vaccines, and they’re the first ones getting it. That’s what we need to see, is that kind of kindness and concern from the healthcare industry too. That, look, our employees are the first ones going and getting this because they care about our population. Seeing that, putting these kinds of positive messages out on social media.
So, I think we need to have more televised responses from public health officials about what they think. Bring the science out and, if that information is changing, promptly bring that science forward. And not just say, “Oh, maybe we should consume disinfectant,” or, “Maybe we should take certain medications prophylactically when they have not been proven to treat COVID-19.” I think this comes from good leadership who cares, who has the empathy, and the kindness, and the compassion towards people.
RR: The COVID-19 pandemic has highlighted, among other things, how ingrained systemic racism is in all institutions in the United States specifically healthcare and the medical systems as we are seeing Black, Indigenous, and Latinx communities disproportionately impacted by the pandemic. This seems to be a common occurrence in the US, where marginalized communities, specifically marginalized racial and ethnic communities, are the most impacted by chronic illnesses and disabilities due to the system that, at best, is ignoring these communities and, at worst, is purposefully excluding these marginalized communities. Why do you think it’s important for disabled, chronically ill, and neurodiverse folx who are part of marginalized ethnic and racial communities to speak about disparities and ableism, and the stigma they might be facing?
TAO: I think it is such a huge issue because, first of all, the education might not be reaching them. So, part of my MPH program we had to do is an analysis of how we would implement different policies, do things differently from what’s being done to prevent a second wave for COVID-19 in the fall. That’s something I worked on in the spring. One of the things that we identified as a team was that a lot of the neighborhoods, for instance in New York City, that have some of these more marginalized populations – or just have racial or ethnic minorities in general – they’re not receiving the education.
I feel like racial and ethnic minorities, especially the Black and Latinx communities, have been hit harder because the education isn’t reaching them. And even when it does reach them, there’s no ability to be able to shut down their business or stop working the way that some of the more privileged populations might be able to stop working or work from home. A lot of these people are on their feet, are doing construction, working in grocery stores, driving Ubers, etc., that they had to continue to work in order to support their families or themselves.
And I think these people need to come up and speak about their situations. We haven’t been hearing enough about them. The government’s definitely not bringing these voices forward. Neither is the media. Because we don’t understand. Some of these people might have seven, eight, nine kids, we don’t even know, and in order to bring food home for them and make
sure they don’t go into further poverty, they have to keep working. I think that’s been a huge aspect of the disparities, and in order to get food at some of these food banks, you’re waiting in line for the whole day. So how do you feed a family? How do you make that work?
And I think the social services just haven’t been there for a lot of the racial and ethnic communities who faced COVID-19. They might be living with roommates who might have been exposed, then they get it, or say their kid gets exposed, or they get exposed, and they’re bringing it home. That’s how it’s spreading in a lot of these communities, and I think that’s what we need to understand, how do we support these people.
A stimulus package can only help so much. Food banks can only help so much. I personally would have proposed a different kind of stimulus package. I think it needed to be tiered. You know, to help some of these people who are really struggling. Even with food stamps, you have to make sure that they have food on the table. I really think that we needed to not just draw out a stimulus program without considering all the different minorities that were being affected and their class of wealth, their socioeconomic class.
RR: As someone who works in advocacy and is involved with public speaking, why is it important to you to share your story?
TAO: So, it’s extremely important for me to share my story for so many reasons. I think when I first came into the Crohn’s disease space, sharing my story about two and a half years ago, I remember people just embracing me with open arms. I think they wanted to hear what a South Asian American woman’s experience with Crohn’s disease was because there was nobody else talking about it in this space.
You see, in my culture, we’re not supposed to talk about these things. During the pandemic, that’s changed, but it’s considered a flaw to talk about a disease, and there’s a lot of ableism in many cultures around the world. And I think I came forward because I was really sick and tired of living and suffering in silence. This is a huge part of my existence. It’s not just some little stomach problem like many people have told me, and I think it’s important to not minimize our experience. I think it’s important to share them. I think to each their own. Everybody has their own way of dealing with it.
But I think I wanted to do this because I had had so many harrowing experiences with this disease. I had accumulated so much knowledge based on those experiences, and I thought it would be a disservice not to share what it was like to be living with so many severe aspects of Crohn’s disease and what it was like culturally to be told, “Oh Tina, you can’t get married with an ostomy bag.” “Oh Tina, no one’s going to marry you with a bowel disease, no one’s even going to let you into a kitchen to cook, or no one’s going to give you a job.” Like, you’re basically untouchable, unlovable as this person with a disease, a disease you’ve never chosen to give yourself.
So, I was really tired of the ableism, and I wanted to shift things. That’s why I started to speak up, because if I couldn’t change the way the last decade or 12 years of my life had gone at that point with this disease, I wanted to change it for myself for the future, yes, but more so for the generations behind me. Because in many cultures, there’s a lot of ableism, lack of acceptance towards the disability community at large. Even in ours, in American society. It’s even more pronounced in other communities where you’re not supposed to talk about this kind of stuff because it’s so taboo, it’s so stigmatized. So, it was one of those things where it was like, “Either you do it, Tina, or you don’t, and you continue to suffer, and you continue to be miserable with your existence. You want to do something to change the way the world looks at us? Or your culture looks at this?” The change begins with me – I have always believed that you have to be the change you wish to be in the world and the change you wish to see in the world. So, if I can’t do it, then how can I expect anyone else to?