About IBD Episode 63 - Accommodations, Health Insurance, and IBD at Work

About IBD Podcast Episode 63 – Accommodations, Health Insurance, and IBD at Work

People who live with Crohn’s disease or ulcerative colitis have more to consider when it comes to the workplace. The cost of inflammatory bowel disease (IBD) means that a comprehensive insurance plan is a must, which may limit job choices. A flare-up or complication that results in absences can lead to poor performance reviews or difficulties with supervisors or co-workers. How can people with IBD cope? Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about missing work, being underinsured, and changing jobs while managing IBD.


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Find Megan Starshak on MeganStarshak.comTwitter, and Instagram.

Find Tina Aswani Omprakash on Own Your Crohn’sFacebookTwitter, and Instagram.

Find Mary Elizabeth Ulliman (Emmy) on Instagram.

Find The Great Bowel Movement on FacebookTwitter, and Instagram.

Find Amber J Tresca at AboutIBD.comVerywellFacebookTwitterPinterest, 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 second part of my series exploring how a diagnosis of inflammatory bowel disease affects having a career.

Today you’ll hear from 3 women with IBD who were diagnosed at different points in their working lives. Megan Starshak, who was diagnosed with ulcerative colitis before college, Mary Elizabeth Ulliman (she 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.

People are often conflicted about how to acknowledge IBD in the workplace. It’s an extremely personal decision and there are so many factors to take into consideration. Being more transparent about having a diagnosis of IBD could help manage expectations and allow for any accommodations that are needed but it can also mean that coworkers and supervisors may view you differently than they do your peers. Health insurance is another major concern throughout the life of someone who lives with IBD. Many healthy young people will take a less comprehensive healthcare plan because those often cost less money. And for the most part, that makes sense, unless you have a chronic illness like IBD, which tends to be expensive. Learn how Emmy, Megan, and Tina coped with these issues and stay to the end to hear my 5 tips for managing IBD in the workplace. 


NARRATION (AMBER):
If you remember from Episode 62, you’ll know that Emmy’s health problems began when she was a senior in college but Shortly after she started her first job out of school, her symptoms became too much to live with. Emmy went through a lengthy diagnosis process during which she was coping with a bacterial infection (C difficile) and was misdiagnosed several times before finding an IBD center and being diagnosed with ulcerative colitis. As far as she knew, however, when she began her journey in the workforce, she was a healthy 24 year old. That influenced her decision-making when it came to health insurance. She made a logical choice with the information she had at the time, but it unfortunately turned out to be the wrong one.

AMBER:
Your first year in a new role, and even as a young person, you’re learning how to navigate things like insurance on your own. How was that from the insurance standpoint, being there for your first year?

EMMY:
Miserable. [Laugh] My parents are wonderful. And my dad just was so good to me, like helping me figure things out with insurance. This was before I got diagnosed, and even after, but, you know, it got to be “insurance choosing time,” which is November and open enrollment was happening. And I remember this conversation and I was like, Dad, which one should I choose? And we had this whole conversation and we laid out every possible scenario: was I going to have surgery was I going to have any procedures done and and, you know, it was like, no, I was like, pretty clear and really healthy. And he, he was like…my office was offering, my company was offering a sort of an incentive to choose, you know, the, the lower tier lower tier insurance so he was like, “why would you not do that?” And I was like, why would I not do this? 

So I ended up going with that one, hit my deductible in Michigan on that for January 7, so it was good to go there when I did not realize because I didn’t do a lot of research on it was that this plan in particular had a lot of caveats with out of pocket, maxes and deductibles that expanded beyond the state of Michigan. So I I had an in-state deductible and out of pocket max and everything and then also out of state and like I said, I got sick on vacation. So it was an extremely stressful financial time for me because I was totally broke when I started my job. And I had had a few months to make some money and then all of a sudden I was getting hit with these medical insurance bills. I mean, and I probably spent, I probably ended up spending close to $20 k that year, out of pocket on medical stuff just because I didn’t know the ins and outs of the insurance. 

So when the second second time for me to choose came around, I’ve been on the most expensive, the highest everything coverage plan since then. And it has served me incredibly well. I never…I don’t ask questions anymore. I know what I know about this plan. It doesn’t change year over year. And it has served me very well, in all aspects, all states. 

[Laughter]

AMBER:
Right. And I think what you did that first year was perfectly reasonable, given your age and what you expected. The problem is, a lot can happen in a year. People can even get into a car accident. You know, this is the problem with insurance, just, on the whole, and insurance in the IBD space in particular. If you were to look for a new role, how much do you think the insurance plans would play into your decision making process?

EMMY:
I would say it’s actually to me probably more important than how much I’m getting paid. Because I have seen what can happen in a year to your point. And it’s impossible to know. And it’s impossible to know whether or not the medication you’re on is going to stop working. So for sure, incredibly important.

AMBER:
So would you say that insurance coverage is the most important part of finding a new role?

EMMY:
I would say insurance coverage… I think it’s three things, right, insurance coverage, obviously how much money you’re going to be making. And then the third piece to me would be that flexibility of schedule, so that if something were to happen, I sort of have the peace of mind to know that this role I’m taking is okay with me needing to work from home or from the hospital or wherever I might be, because I have a lot of doctor’s appointments. So those are sort of the three things that I look at.


NARRATION (AMBER):
Tina also experienced challenges with being underinsured. Medical therapy was failing, she was at an unhealthy weight, having lost 50 pounds, and she needed surgery for what was then diagnosed as ulcerative colitis. Years later, her diagnosis would change to Crohn’s disease. The short term disability plan Tina had bought into as part of her insurance package at work ran out after 6 months. She then lost her job at the same time she was undergoing a colectomy and subsequent j-pouch surgery. While the company where she was employed worked to make things right for her, and re-hired her when she was ready to return, she still learned about disability coverage the hard way.

TINA:
When I had gone back, like 11 months later, 10-11 months later, when I’d gone back after my surgery, rather, because it was over a year later that I went back to work period. I started developing chronic refractory pouchitis, which was actually Crohn’s. And I had to leave again, but I bought Long Term Disability at the time. When I was rehired….

[Laughter]

AMBER:
It only took once! 

[Laughter]

TINA:
When I was rehired the HR lady who had fired me called me and said: Tina, you need to buy long-term disability.

AMBER:
Yeah.

TINA:
They made it right. They did the right thing and I really appreciated the company and respected them for that, but I I do remember buying the long term disability.

AMBER:
HR usually doesn’t come to you and tell you about these things.

TINA:
They certainly don’t. And the other thing I’ll add and I want people to know this specifically is because my manager started telling people she was hiring after this happened to me. I was 23, almost 24 I didn’t think I was going to need long term disability.

AMBER:
Yes.

TINA:
I was like all this is another $13 a month? I’m at the prime of my life! [Laughter] I’m not vulnerable to illness! Finally, when I went out on long term disability, they sort of gave me my, you know, percentage of my part time salary. So it still helped nonetheless, and I still have health insurance, you know what I mean? Like that sort of thing definitely helped. 


NARRATION (AMBER):
Megan recently changed jobs and health insurance was a major consideration in her decision making process. She used the tools and resources available to her in order to make the switch as seamless as possible, such as the Crohn’s and Colitis Foundation Help Center and the health insurance marketplace at Healthcare.gov, as she explains.

MEGAN:
Insurance is definitely a factor in sort of the just the overall where you land with employment. It’s something that I always prioritized looking at jobs, what is the health plan like? And lo and behold, I’m ending up in a place where I’m going on marketplace insurance, which was which was in my mind was like the last thing that I wanted to do, but the opportunity is such a good fit. So it like anything else, it’s, it’s pros and cons. 

I was able to search the marketplace by my doctor and my medications. So that made it really easy to not have to, you know, maybe call and be transferred 18,000 times to figure out if, if if it’s going to meet my needs as a UC patient. The Foundation also has some resources that can help you navigate that which, which, which are real people that you can communicate with. So that’s a really great resource.

If you if you’re at a job for a couple of years, and you’re sort of an autopilot with your insurance, every year, you may be like, you get a new card in the mail and you just kind of deal with your deductibles and your out of pockets and maybe not a lot changes. So it’s, it’s getting uncomfortable with having to learn and adjust to a new, a new plan.

And the other thing that is, as many of us have a lot of appointments or procedures or or maybe some expensive medication, so I am very lucky that it is the beginning of the calendar year, that this new opportunity has come my way. So I left with, you know, having having met my deductible and my out of pocket very early last year. And if I had left in, say October that I’m starting at the end of the year with a new deductible to pay against, which for for many of us is is thousands of dollars. And I don’t know about you, but I don’t have thousands of dollars laying around and so that’s the thing that I need to consider. So I’m going in with it with a new calendar year with a new deductible and out of pocket. So timing on that is something that I did have to consider.

And job searching obviously is hard and you have to find the right match and and timing is not always going to be your best or your most favorable thing to, to work with. But if you can kind of tweak it so it it helps you in that way it’s it’s something to think about that. 

A lot of people, it’s never crossed their mind. Financial assistance from my from my drug manufacturers also, it’s also very helpful in this situation. You know, I kind of just looked at all of the numbers and how much with with going on marketplace insurance, how much is it going to cost me per month and but then the deductible and out of pocket at how much is going to be covered through financial assistance. If that, you know, gets tripped up like sometimes it does. What do I do then and, you know, with a new salary, or like, do all of these numbers add up. Do they?

There’s just so many more more things to think about than the average person.

[Music: About IBD Emotional Piano]


NARRATION (AMBER):
Hospitalizations, surgeries, and procedures are an unfortunate fact of life for people who live with IBD. Being gone for an extended period of time, even the 6 weeks that’s needed to recover from many types of abdominal surgery, is challenging for employers and employees. There are a host of issues that people face when they are ready to go back to work. Their job might not be the same when they return, co-workers or supervisors might react to them differently, and then there’s the emotional side of recovery. Emmy and Tina explain how this aspect of life with IBD has affected their careers.

AMBER:
Can you think of any examples of things that people have said to you about missing work about, I don’t know if you’ve had situations where you’ve come in late, sometimes for people with IBD mornings are tough, or you need to leave early. Has anyone ever sort of talked about it in a way that you found less than helpful to you?

EMMY:
There were some instances as at work where I, it was kind of used against me in in varying ways. You know, like any company, there’s performance reviews, and I had missed a lot of time. And looking back now, there were probably some things that really weren’t okay for someone to say to me and something like that. But I didn’t know at the time, it was the first time I was going through anything in terms of like a professional review. So I just sort of took it and moved on and was frustrated that, you know, I had been sick and I had not allowed me to be in the office as much as my peers. I think from a social standpoint, as well, it was really difficult because I “looked fine.”

And these were new friends that I had made, and they didn’t, you know, they were, they tried to be as understanding as they could, and, but at some point, it was sort of like, Why is this girl not better? And it was frustrating to try and make plans with me and do things with me because I was always saying, I can’t or no or I’m too tired or I just don’t feel good. And you know, at 23 when you’ve never experienced that or seen someone close to you experience it, it does kind of look like someone’s faking it, and I know that. So I think there were struggles with less than helpful reviews, performance reviews at work and also just with the social piece of trying to, I was so excited to go to this new place and be a real grown up and make my own way and new friends and new support system and everything and it really threw a wrench in everything. 


NARRATION (AMBER):
And now here’s Tina again.

TINA:
So that was a really hard transition to make. I think being out for all those surgeries, I will say and I want to add this because I feel like this is not talked about enough. When you’ve had such life threatening and harrowing experiences with your health, going back into a career where you’re like, where people are telling you this needs to be done yesterday, it’s just like, how is this so important? 

AMBER:
How is this important?

TINA:
I nearly died. 

AMBER:
Exactly. 

TINA:
And I think I was a changed person because serious illness had hit me at a really young age. And I felt like I was a lot older than some of the people that I was working with. I felt like perhaps I was way too old. You know, I felt like I was like, like an older lady or something that had a different perspective on life. And coming back to that was really I think it was almost like shell shocking. Like it was just I came back shell shocked. 

And I remember having to go out when I started to get sick with the pouchitis, I had to reduce my hours so when I was rehired. I was like the max I can do is 50 hours a week. 

AMBER:
Yeah. 

TINA:
So I was doing like, nine to seven or eight, six and I remember them saying, well, that’s kind of like it wasn’t really said. But it was, you know, that’s like, it’s so few hours to begin with, like, we usually expect 70 hours a week and I was like, there’s no way I can do that. So I started at 50 hours and I, I kept those boundaries up really high. And I made sure I slept 10 hours a night. So I really had no life. I would be home for two hours before I went to bed. So, and I had to hire somebody to cook. Sent our laundry out. It was too much for me and I had to take cabs back and forth to work. Luckily, we didn’t live that far. But it was really, really a difficult adjustment to go back to work after. So I did that for a year and then I’d say about nine months into it, I was really starting to struggle because I was on Cipro/Flagyl  for almost the entire time.

AMBER:
Yeah. 

TINA:
And then I started stopped responding, they switched the medications, Xifaxan, Augmentin, this, that, or the other, and I reduced my hours to 40 hours, then 32 and HR was like, okay, we can’t go past the 32 maybe you can work from home one day a week, do something like that. But, um, but I will say that sense of urgency around my work wasn’t there anymore. That drive wasn’t. And I think they, my boss asked me at one time, at one point, because it was a different boss. She’s like, Tina, you just you’re not the same, you don’t have that zest, that you used for work, that passion that you used to for this work, and because I just don’t see the importance of it.

AMBER:
Exactly.

[Music: About IBD Emotional Piano]


NARRATION (AMBER):
IBD is covered under the Americans With Disabilities Act. That means that people with IBD can ask for reasonable accommodations in order to work at their job. Accommodation could mean being allowed to come in to work an hour later or moving to a seat closer to the bathroom. It could also include getting an ergonomic chair because of joint pain or being able to make up time needed for doctor’s appointments or procedures. However, the laws about accommodations don’t cover how people with IBD might be perceived at work by their peers and supervisors, as Emmy and Megan explain.

AMBER:
Do you think you work harder or more hours than your healthy peers?

EMMY:
So I have been an incredibly ambitious person my whole life.  I don’t know that the answer wouldn’t be yes, if I didn’t have IBD because I just, that’s just kind of the kind of human that I am. I do think I…I spend a lot more time worrying about how I am perceived. So I do overcompensate in that way, I don’t know that I necessarily am working more hours.

Sometimes my days are longer because I’ve got to fit in the doctor’s appointments and things like that. But as far as making sure that like my, I’m still on my brand, and people are thinking of me a certain way. And I’m really, really sensitive to that because of this stuff. So in that way, I think, I feel like I use more brainpower sometimes because I have these extra things that I worry about and spend time thinking about. 

But I have figured out a pretty efficient way to make sure that I’m getting things done and so I don’t have to work extra. That being said, if there is a hospital stay in the mix: 1000% I’m working more because I really don’t want people to think that I, you know, yes, I’m in the hospital and they have, they’re usually amazing about being respectful of that. And not even just respectful, like, supportive. I’m getting flowers and balloons and my coworkers are wonderful. Which is so lucky. But when I come out, I’m like, I gotta make up for this. So yes, my days are longer, then.

AMBER:
Oh, it’s almost like a crash course in public relations, isn’t it?

[Laughter]

EMMY:
It’s, I mean, I think I could be a publicist. Yeah, I really do. I think it’s kind of like half the battle with this in a professional world, figuring out how to how to present it to the masses in a way that like doesn’t get you a negative opinion. And then you gotta prove it. And that can be hard.


NARRATION (AMBER):
And here’s Megan again.

MEGAN:
Yeah, I think that being proactive is always a really good strategy for managing life with IBD. In your, like, greater community in your world. I think that i think that’s it’s like there’s a little bit of nuance and attitude too, so if you come into a role and you and you decide to disclose and you’re like, “Hey, I have this incurable disease, and this is what it is, and this is how it affects me, and, and here are the tools that I’ve put in place so that I can manage it to the best of my ability. And these are the ways that it might affect me at work, but here’s what I’m doing about it.” And just get ahead of it. 

And, and also just, it’s just that attitude of like, it’s going to be different, but it’s not going to stop you. You might need exceptions, you might need to leave every 8 weeks to go get your infusion you might, like, I’ve left work to go buy clean underwear before and I know I’m not the only one.
It’s like it happens. It’s the nature of the beast.

But I show up and and I and I’m positive about it but like also realistic and I do have plans in place for, for if I need to, you know, adjust my day or adjust my hours and feeling good and maybe, you know go a little bit extra, work a little extra if I need to just just really show that I am there to be a hard worker and a valuable member of the team.

[Music: About IBD Transition]


AMBER:
I want to leave you with my 5 Tips for Navigating the Workplace With IBD.

  1. Tip number 1. Think about how much you’re willing to disclose about your IBD. Your employer shouldn’t be asking you questions about your health. But consider all the angles of how your employer and your co-workers will view your illness. On the one hand, it can be challenging to let people you work with know about your health but on the other hand, it can be helpful if those around you are understanding about the ups and downs of IBD.
  2. Tip number 2. Remember your rights. In the United States, you are entitled to reasonable accommodations under the Americans With Disabilities Act. Moving your desk closer to the bathroom, working from home on certain days, or coming in later are a few examples of accommodations. You can also take advantage of the coverage under the Family and Medical Leave Act (or, FMLA) if you work at an organization that has more than 50 employees and you have been there for more than 1 year. It’s unpaid leave, but you are entitled to 12 weeks over the course of the year. FMLA days can be used for anything from a day for an infusion to a hospital stay. 
  3. Tip number 3. Prepare for emergencies and flare-up days. With IBD, there are going to be times when your health takes priority. Being ready for the issues that are more than likely to crop up will help. That could mean keeping good records so that others can cover for you more easily or making sure your deadlines are realistic in case you miss some time at work because of an IBD-related issue. 
  4. Tip number 4. Choose your health insurance plan carefully. People with IBD will need more coverage and so not only is it a good idea to get a plan with more coverage, it’s also important to buy into short- and long-term disability plans on the chance that you’ll need it. Use the resources available to you, including talking to your HR manager, the insurance company’s web site or phone number, the pharmaceutical company that manufactures any drugs you’re receiving, and the Crohn’s and Colitis Foundation Help Center. I’ll put information in the show notes and on the episode 63 page on my site, AboutIBD.com.
  5. My 5th and final tip comes from Megan, who has this advice about keeping work stress under control.

MEGAN:
My advice would just be to keep tabs on not overdoing it. It’s OK to focus on the balance of your life, of your health, you don’t have to work 60 hours a week and then go to happy hour with your team three nights a week and then you know, plug in on the weekends. And, and all of that stuff like it’s okay to not pile that stress on your life, it’s okay to take time for yourself or your family for your hobbies. 

But i think that’s also just like the world that we live in is like, you know, like the hustle and grind world of more and more and more and keep pushing and like that’s not healthy. So for anyone, especially with a disease like IBD where for many of us, stress may make our symptoms a little bit worse and add to our fatigue and just like you know, our mental health. So just you just keep that balance and like prioritize your health so you can you can fill your career bucket and you can fill your personal bucket and you can not drain your health bucket.


[Music: IBD Dance Party]

AMBER:
Hey, super listener. Thank you to Megan Starshak, 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 63 page on my site, aboutibd.com.

Did you know you can help me keep producing this show? By subscribing in your favorite podcast app and leaving a review there. I’m a small creator and I don’t have funding or a staff, so I stay in business through people like you subscribing and sharing my content. Sharing is simple, it’s free, and it will ensure that I can continue to be an independent voice in the IBD community.

About IBD is a production of Mal and Tal Enterprises. It is written, produced, and directed by me, Amber Tresca.

Sound engineering is by Mac Cooney and theme music is from Cooney Studio

Until next time, I want you to know more about IBD.

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