How does having Crohn’s disease or ulcerative colitis have an impact on your career? The symptoms of IBD, as well as the cost, can affect the ability to work in the same way as healthy people. Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about coping with college, first jobs, and career derailment as a result of their disease.
Information discussed in this episode includes Clostridium difficile (C diff)Infection, Short-Term Disability Insurance, Colectomy Surgery, J-pouch Surgery, and IBD and the Americans With Disabilities Act.
Find Megan Starshak on MeganStarshak.com, Twitter, and Instagram.
Find Tina Aswani Omprakash on Own Your Crohn’s, Facebook, Twitter, and Instagram.
Find Mary Elizabeth Ulliman (Emmy) on Instagram.
Find The Great Bowel Movement on Facebook, Twitter, and Instagram.
Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.
Credits: Sound engineering courtesy Mac Cooney. “IBD Dance Party” ©Cooney Studio.
Episode Transcript
[music: IBD Dance Party]
AMBER:
I’m Amber Tresca and this is About IBD. 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.
Welcome to the first in this series of episodes exploring how a diagnosis of inflammatory bowel disease affects having a career.
For today’s show, you’ll hear from 3 women with IBD who were diagnosed at different stages. Megan Starshack, who was diagnosed with ulcerative colitis before college, Mary Elizabeth Ulliman (shes goes by Emmy), who was diagnosed with ulcerative colitis less than a year into her first job out of college, and Tina Omprakash, who was diagnosed with ulcerative colitis, later changed to Crohn’s disease, a few years into her career.
Being diagnosed in the college years or in the early part of a career can have a profound impact on one’s working life. In some cases, it may mean that difficult decisions need to be made, such as changing a college major or taking a job because of flexible hours or a good insurance plan. In others, it could mean only being able to work part-time or from home, or even going on disability. The end result is that people with IBD may wind up in a place that they never expected to be, but…that’s not always a bad thing.
NARRATION (AMBER):
IBD is a disease of young people. It is most commonly diagnosed in people who are between the ages of 15 and 35. This means that adolescents and young adults may be diagnosed before they start college or somewhere during their college career. Some young adults know exactly what they want to study in school or the career they want to pursue, while others may have a more vague idea. Having a chronic disease, however, will probably influence those decisions. The illness may have even more influence on a chosen career than what a person is suited for based on their knowledge, skills, or preferences. Coping with IBD might mean making a change in major, putting off school or taking a hiatus to cope with health issues, or deciding not to go to school altogether. This is, of course, not a voluntary choice at all: it’s often the course of the IBD that hijacks college and the plans for after graduation, which is what Megan experienced.
MEGAN:
My name is Megan Starshak. I was diagnosed with ulcerative colitis when I was 18.
AMBER:
And so you were diagnosed with ulcerative colitis, right when you were heading to college?
MEGAN:
Correct.
AMBER
How did that, or did it, enter into your choices when you were choosing a major?
MEGAN:
When I was starting college, I already had a major picked out so I was diagnosed this summer before I started so not totally enough time to maybe change routes. Also not enough time to realize what a big disease IBD is. And that being a teen not thinking about how this is going to affect literally the rest of my life. So I had in high school taken AP psychology class, and I loved it like, like, like, easy A, I just could not get enough. Dug right in. And so I and I got a psychology degree and that’s something that I stuck with throughout college, but what I wish somebody would have told me earlier on is, and they probably honestly did, I didn’t think about it, but get a degree that will get you a job. And, you know, I graduated college in 2006. And so we were just sort of sliding into the recession. So sort of that combination of chronic disease, psychology undergrad, starting a recession. made it really hard to find a job initially.
NARRATION (AMBER):
After tackling the difficulties of college with chronic illness, which isn’t an easy thing in itself, it’s time to leave that bubble and enter the workforce. As Megan said, finding that first job right out of high school or college is challenging and it’s often an intense time. Most people find themselves working a lot of hours, trying to make their mark, maybe get noticed by more senior people and get better assignments or even a promotion. For Emmy, IBD symptoms began in college but it wasn’t clear what her diagnosis was and she was bounced around a bit before doctors finally settled on IBD and then, eventually nailing down which form. In the meantime, she worried about making it in to work every day, even when she was sick.
AMBER:
The first thing I want to know is about your name because your name is complicated. So how do you say your name?
EMMY:
So my legal name is Mary Elizabeth Ulliman. So I’m one of four. And growing up, my mom used, used our initials for a lot of stuff, because there were a lot of us and things that had to be labeled and whatnot, but I was always me, not just EM. And so I started signing ME at the end of my emails. And about two weeks later, I had a co worker come up to me and just ask, can I just call you Emmy? And I was like, okay, sure. I don’t mind that and then it just stuck.
So I was officially diagnosed at 24 years old. However, my IBD journey kind of started before that the official diagnosis came about a year after my first really bad flare. And then looking back, I could see that it had happened before then, but I just didn’t know what it was. So at 22, I was a senior in college, and I had some issues during the school year, and I just thought it was stress. I was stressed about graduating and going to the real world. I already had secured my job, which I was very excited about. But to get some, some flack for it was a tough time in the the economy at the time. So I didn’t really think anything of it. I was okay for the fall. I [was] pretty normal, made some really good friends that I was really excited about.
It was just this sort of like constant tornado spinning of I’m sick, but they don’t know what with. I didn’t have any support there besides my coworkers who are other 23 year olds who couldn’t just take off work to help take care of me.
But they did a an emergency flexing that day in the hospital. I woke up and they said, we think you have ulcerative colitis. I had no idea what that was. The next year was rough because they kind of kept retracting these diagnoses. So they were like, we think you have ulcerative colitis. Just kidding. You have Crohn’s disease. Just kidding. We think you’re celiac, just kidding. I mean, it was like every GI affliction in the book, I had at some point. So they had me on, you know, a gluten-free diet, and then a lactose-free diet. And I mean, I was not getting very good care.
AMBER:
How long were you out of work to deal with all of these things?
EMMY:
On and off throughout that year, which is 2011. It was probably two weeks the first time and in January when I initially had the first really bad flare. And then because I was dealing with the C diff for about six months afterwards. it was, you know a couple of days at a time but multiple times a month. So I do have the flexibility with work to work from home which was a total blessing. So I could try and get as much stuff done as I could around home. And there was a point where it was like, you know, you have to make sure that you’re you’re showing your face and you’re in the office and so I do remember days where I definitely should not have been in the office. But I would you know, I go in and I would have my ensure because I was trying to gain weight and I would sit at my desk with my Ensure and try and and just try so hard to focus on doing my job and doing a decent job of it. I would say I probably have the first six months of the year. I probably missed two months of those six.
I was okay for a few months over the summer. And then in August had another really bad flare actually, while I was on vacation, which, and it ended up, I took two weeks off because I hadn’t taken any vacation time off to go on a trip with my family and got sick on the trip, which resulted in another two to three weeks after that being out. So, you know over the course of that first year: months, I missed months.
NARRATION (AMBER):
The long hours and the stress of some careers can take a toll on anyone, even healthy people, but for those who live with IBD, it can profoundly affect disease course and overall well being. In the corporate work culture in America, it’s sometimes an unspoken rule and sometimes flat out expected that employees work more than a 40 hour week. For younger employees it can be especially challenging, because they are often told it’s necessary to work longer and harder in order to get ahead. For Tina, commuting into New York City every day for her job in finance meant long days until her diagnosis came out of the blue.
[sound: New York City Subway]
AMBER:
Tina, I’ve been thinking a lot lately about how, as people that live in with inflammatory bowel disease, about how our career trajectories, end up being changed by these diseases. And I think that you’re probably a really good example of this.
TINA:
Sure. So I had two degrees. I had one in finance and one in Spanish. The Spanish one a lot of people don’t know about but might be getting to know more because I’ve been trying to talk a little bit in Spanish. And what happened was initially I started at Lucent Technologies, and I was doing a lot of their controller type work, which is accounting and finances their balance sheet work. It was a pretty dry job. But and I used to work a lot of hours, I was working like 13-14 hours a day. And during book close, which was like after the quarter closed for three weeks after, we would be at work until like three in the morning, and then be back at eight. So it’s pretty intense. So I started in Telecom, I did that for about a year.
But during this time, I also started graduate school. And I was pursuing a masters in financial management. It was very exciting even though I was working long hours there as well doing book close. I also worked until 2 or 3 am in the morning and I was actually back by like 9 or 10 in the morning.
But this was very hard to maintain because during this time when I moved to Merrill Lynch was when I was diagnosed with ulcerative colitis at the time I was diagnosed with which we now know is actually Crohn’s disease. But that’s when I was diagnosed. And it was, it was heavy hitting for me because I was like, how is this going to affect my career and people were like, your prospects might change, you might have to reconsider. I was commuting from Jersey into Manhattan, that also complicated things to do that five days a week is not easy. And also to maintain a social life when you’re 22 years old. You want to be out partying, and living your life and drinking and all these things combined with working 70 hours a week wasn’t exactly good for my health.
But I’d say two years later, I got an incredible so I was promoted a year later and that promotion. kicked my [bleep]. I hope it’s OK if I curse.
[Laughter]
AMBER:
Yea, we’ll just bleep you, it’s OK.
TINA:
It really kicked my [bleep] because I was showing up to work at 6am and I was working till 10 o’clock at night. My boss at the time was emailing me starting at 4am.
AMBER:
Oh my goodness.
TINA:
With work to do and so I was up at 4am getting into work at 6, getting home around 10-10:30 it was really unsustainable and during this time, I started bleeding a lot. Yeah, a lot. And I needed a lot more appointments with the doctors more tests, and my boss was like, Tina, how many appointments do you have in a week? And how many times are you gonna have to leave early and come back, you know, to leave in the city, at least things are in the city. But the thing is that going and taking the subway then coming back waiting in the waiting room that could take three or four hours easily.
AMBER:
Easily.
TINA:
So this was starting to take a chunk of time out of my work day. So I started hearing from my family, you might want to cut back on your hours, cut back on your social life, cut back and take a lot more rest. I don’t know if this career is really for you. And also, I think there was a voice in my head saying, Tina, like you may have to reconsider in a few years. And what I didn’t realize is how soon it would come those few years came faster than I, you know, realized.
[music: Emotional Piano]
NARRATION (AMBER):
It’s during the most difficult parts of the illness that many people find that they have to make a change in their career. But what kind of change will it be? Trying to make it work at your current job? Asking for flexible arrangements like working from home? How about taking a leave of absence? Maybe going freelance or changing careers altogether. For Emmy, who works for a big company where flexibility is available, she found she was still pushing the limits of what was acceptable in her role.
EMMY:
So at the time, I was in a role where I was sitting with the rest of my team, right in the same office, we were working on the same projects on the same clients on the same business. And it did complicate things to work from home. So while it was permitted, to a certain extent, and and actually not seen totally unfavorably, it was just sort of when you cross the threshold of doing it too much. People would get frustrated and rightfully so. Because, you know, when you’re trying to work together like that, there’s something to be said for being able to be there in person all working together. So there was frustration around me not physically being present, which is valid, and I knew it at the time as well. So I do, I was grateful for the flexibility but the flexibility only went so far.
And something that I have looked at I’ve learned to look at as I’ve continued on in the company and continued my journey with IBD is looking at roles that allow for more flexibility. So for example, I work on a team now. We’re a very global team, we sit all across the world, but my one of my partners, my main partner sits in New York. And so it doesn’t matter if I’m in Chicago office, or if I’m in Chicago home, I’m still seeing her on video conference. So that has allowed me even more flexibility. And obviously, the way that I approach looking for a new role or a new team or a new job, within my company is very different than it was back then.
NARRATION (AMBER):
For Tina, her condition worsened to the point where she needed a colectomy and then because her diagnosis was still ulcerative colitis at the time, she also underwent j-pouch surgery. She was so ill that she wasn’t able to come back to work right away. She needed time to recover before she could go back to the commute in to Manhattan every day and the physical demands of her job on the trading floor. She went on short-term disability from her job, which gave her 6 months.
TINA:
But I needed more than six months because I had my surgery July of 2008. And I had my surgery on July 4, July 3, I get a call. Because that was that was the year that I was employed and they were like you you’re up on your six months. Yeah, short term disability and you didn’t buy Long Term Disability. We have to fire you.
AMBER:
Oh my gosh.
TINA:
I was fired the day before my surgery.
I mean, I was 85 pounds. My normal is 125 to 135. So I had lost 50 pounds during that time and I had a tube in my arm feeding me the PICC line. And I just I remember being like, just devastated. Like, I’m like, I’m in the ER, I’m going in for surgery and I just got fired from my job. And I was like, is this legal? That’s what I told Ah, yeah. And they were like, well, this is this is just the policy, like if you didn’t buy into long term disability, my boss called me and she was just like, I am so sorry. And she’s like, we’re gonna do whatever we can, when when you’re doing better to make this up. And they did.
So they put me in the, on the legal side. And so they were, it was more like cubbies, not an open floor plan, but it was like little cubbies where we were working. And so that was definitely calmer. And I did more policy research and policy development and training type work, which was fine. But at the same time, it was just like, I think it was really upsetting to know that my disease had prevented me from being on a more ambitious track.
NARRATION (AMBER):
For Emmy, the experience of feeling as though there are limits to her job prospects is similar to Tina’s and she found that it was not always easy to explain to those around her who are not aware of the realities of chronic illness.
EMMY:
Yeah, it is an interesting conversation because if I’m having a day where you know what something work was frustrating. And someone will say, you know, what about looking at a job here or here, or maybe you should go abroad. And I’m like, let’s think about going abroad that this is I would love to, theoretically I mean, I love to travel, I love learning about other cultures, but it’s, it is terrifying and like makes me lose my breath to think about trying to figure that out in another country. So they absolutely and you know, I’ll say I really, I really need the insurance coverage that I have, and they usually shuts them up because they don’t really know what to say back and they shouldn’t because they haven’t had to deal with that.
[music: Emotional Piano]
NARRATION (AMBER):
On the next episode of About IBD, hear Megan, Emmy, and Tina describe how they coped with the challenges of IBD in their workplaces including how it affected performance reviews, why insurance plans are important when considering a new role, as well as how they’ve taken what they’ve learned through their disease journeys to craft the work-life balance they want.
MEGAN:
I always thought that I would end up in business somewhere which I did end up in marketing. But, you know, sometimes everything comes together, it just takes, it just takes its own time and path.
EMMY:
I’m very lucky that I have been able to continue to find roles at my company where I feel that I’m continuing to learn and grow. I have really tried to take the route of openness and awareness with my co workers and with the people that I am around and reporting to. I think a level of openness at least with the person you’re reporting to can change everything.
TINA:
We focus so much on what this disease takes from us. But how much does it give us back in return? I think it’s really important to have that perspective. And to think about that, yes, we do have to alter our lives. Yes, we have to alter our careers. But perhaps it’s just better suited to our personalities.
[music: IBD Dance Party]
AMBER:
Hey, super listener. Thank you to Megan Starshack, Emmy Ulliman, and Tina Omprakash for their insights and experience on managing a career and IBD.
Find Megan on all social media as itsmemegaroo and on her site meganstarshak.com. You can find Emmy on Instagram as maryelizabethulliman. And you can find Tina on all social media as own your crohn’s and on her site, ownyourcrohns.com. I will put all their information in the show notes and on the episode 62 page on my site, aboutibd.com.
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And remember, until next time, I want you to know more about IBD.