About IBD Podcast Episode 156 - IBD and Accommodations at Work With Katie Connelly

IBD and Accommodations at Work – About IBD Podcast Episode 156

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Amber Tresca and Katie Connelly discuss the challenges and importance of workplace accommodations for individuals with inflammatory bowel disease (IBD). Katie has been through the process of asking for accommodations with different employers and shares her personal experience, emphasizing the need for understanding the Americans with Disabilities Act (ADA). She relates her experience and gives advice to both employers and employees on how to manage the accommodation journey. Plus, she gives the resources that she found most helpful to help her learn about her rights as an employee.

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Transcript (Rough)

Amber Tresca 0:00
I’m Amber Tresca and this is about IBD. I’m a medical writer and patient educator who lives with a J pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease, and to bring awareness to the patient journey. Welcome to Episode 156. IBD affects every person differently when the disease is active or for those who live with severe disease or complications, working or going to school full time can be challenging. IBD is covered under the Americans with Disabilities Act, the ADA defines a disability as a condition that substantially impairs a major life activity, even while that condition is in remission. The upshot is that under the ADEA, people with IBD are entitled to ask for and receive reasonable accommodations at work and school. My guest is Katie Connelly who lives with Crohn’s disease. Katie has been through the process of asking for accommodations with different employers. She relates her experience and gives advice to both employers and employees on how to manage the accommodation journey. Plus, she tells us about the resources that she found most helpful when she was learning about her rights as an employee.

Amber Tresca 1:25
Katie, thank you so much for coming on about IBD.

Katie Connelly 1:27
Thank you. I’m so happy to be here.

Amber Tresca 1:30
Absolutely. It is. My pleasure. I’m really excited to speak with you today. It’s a topic that we haven’t done very often on about IBD. And so I am so excited to get your thoughts and your experiences. But let’s first start by having you introduce yourself to our listeners.

Katie Connelly 1:47
Thank you. So my name is Katie. Some of you may know me as bad as with a badass just because of my my handle. I was diagnosed with Crohn’s disease when I was 10 years old. So I am now 29. And I’ve had it for 20 years. I work in the supply chain industry. Currently, I graduated from Bryant University with my supply chain degree. I love the operations process. I love knowing how things are made from all the way at the beginning and then how they ended up where they’re meant to end up. So whether it’s to the end consumer, or to a human body, I worked in the medical device industry at one point, but now I went more casual in the retail industry. But my passion is advocating, which I’m trying to do full time. So hopefully that will be the next move. But taking my business degree and my supply chain experience with me.

Amber Tresca 2:40
Katie, you’re so interesting. I honestly feel like I could go into so many different directions with you. I’m gonna have to focus. Alright, I’m gonna focus right now. This is a podcast about flow tarballs. Okay, so, Katie, as you have briefly intimated, you have had a long journey with Crohn’s disease. And so I like to start by having my guests give a little level set. So tell me a little bit about how and when you were diagnosed? Yep, so

Katie Connelly 3:09
I was 10 years old. And my symptoms were very mild, I had some upper abdominal pain, nausea, regular fatigue, I was always kind of like a sick child growing up, so it kind of just went under the radar. But at the time, I was getting fitted for a retainer. And my orthodontist actually called out the fact that my gum was inflamed. To this day, it still is inflamed, but it’s just this bulk of gum that lives right on top of my teeth. And he asked my family if I had been experiencing any, like autoimmune symptoms. And my mom was like, no, but that sparked the discussion of like, maybe my symptoms at that time was a little bit more than what was actually going on. So that started kind of the diagnosis process, which for me, was only a couple of months. Thankfully, I was able to get into a GI relatively quickly, which isn’t always the story nowadays. And I had a colonoscopy. I didn’t really have any prior tests, but had my colonoscopy. And I was diagnosed with Crohn’s disease, which was a very casual diagnosis. And I was 10 and had no idea what was going to happen next, which is always the story, obviously. But I think for a 10 year old, especially 20 years ago in the medical field, it was definitely a very interesting first step for me to start my IBD journey for sure. Never knowing that it would end me up here still talking about it still experienced. Signet full time. And that was just kind of like the beginning of it very mild until it kind of took over my whole life eventually.

Amber Tresca 4:51
All right, Katie, so you were diagnosed as a child moving from pediatric to adult care, that’s a whole other are wild can of worms. But would you let me know about the last couple of years. So tell me where you are now with your disease journey. Just

Katie Connelly 5:10
even thinking about the transition from pediatric to adult care is traumatic in my mind. But it led me to really kind of going down a pipeline of losing my remission where I was at at that time. I had a bowel resection when I was 15. And that really helped kind of level set my playing field of like, get me into remission kind of level set me for all the future medications I would be on. And I was hoping that I would be able to kind of just get through college and be able to graduate, when so much of my time had already been taken away from me. I had started at 17 from high school because I was homeschooled. So I graduated and went to college later than the average peer. But I was hoping that that readmission would kind of live throughout my college years and unfortunately, it was kind of a up and down journey throughout those four years. But it led me to developing periodontal symptoms. So I started developing an abscess. When I was in my senior year of college. Unbeknownst to myself, I got into a car accident. I thought that it was I had burned out my back. That was what the pain kind of felt like to me. Oh, wow, I felt like a pole muscle like in my butt cheek like just like something really inflamed. But I started to bleed throughout the night I started to have very strange symptoms, and I eventually couldn’t pull up my pants. And I had been multiple months of me like trying to get my adult GI doctor to like really investigate what was going on. I had had a couple of tests, but I hadn’t really received like full on results from them. I was working full time in college, I was trying to balance everything I didn’t follow up enough. But it was kind of one of those medical mishaps where I was growing an abscess on my body that should have been either drained or I should have been notified about and I wasn’t notified until it was too late and I’d wrapped around the bottom of my spine and I had to get C Thompson which are surgical drains. It’s just surgical wire that opens up the fistula tract and lets it drain officially as a small connection from anywhere in the bowel. Once it becomes very inflamed, the fistula can grow out and connect to wherever it wants to when I was younger, I had six of them. So to have them reemerge when I was in college was very upsetting, but also something I wasn’t fully prepared for and I’d had never heard of c times. So my second semester of college I was recovering from the abscess being drained having the seat Tom’s be put in and learning like what active periodontal disease and Crohn’s looked like. Thankfully, I graduated on time, but it led me entering into the workforce and entering into my adult life very scared and kind of unprepared because I knew how to live with Crohn’s disease up until that point, and I knew what it looked like. But to have active periodontal disease was a whole different ballgame for me that I had no experience with whatsoever. And now I still have active periodontal disease. Unfortunately, five years later, it’s one of the more under researched, underutilized portions of IBD. Unfortunately, thankfully, there’s a lot of stuff in the pipeline’s clinical trial wise, just like that gives me hope. Like I have to say it out loud when I do talk about that to remind myself that there is an end, hopefully in sight sooner rather than later. But it’s very unfortunate that it’s gone on for this many years and led me to this point. Wow. Katie, that’s,

Amber Tresca 8:53
it’s such a journey and periodontal disease. You’re so correct. I know that it is it just absolutely wrecks people’s quality of life. And yet there is study that’s going on. Of course, it’s not fast enough for anyone I think it’s it’s taking a while for these things to come along. But I do know that it’s being worked on actively there’s trials going on right now. So we have everything crossed Fingers, toes, all of that that they come out with better treatments because the Seaton just do. Thank you with the see tons. They they’re not great. I’ve had a few different people on this show. And then also, several people that I know, through the IBD community dealing with the see tons and it’s, yeah, we need to move on from that. All right, Katie, our topic today is accommodations at work for people with IBD and who live with other chronic illnesses. And I think that people with IBD kind of normalize their symptoms. I think it happens in other chronic illnesses as well. And we struggle to ask for help, even when we really do need it, and when it is available to us. So I want to start this topic by asking you, when did it become clear to you that you needed to work with your employers to talk over getting some accommodations. So

Katie Connelly 10:19
like I mentioned, with the periodontal symptoms, I thought that I could kind of start to normalize them, I felt that I had worked for my first company out of college throughout my senior year of college. So they were very aware of this mean leaving work a lot either go to doctor’s appointments, they knew I had Crohn’s disease, because I did feel comfortable enough to share that with them. And there was some sort of further like, personal connections that I had at the company. So I felt comfortable enough to express myself and state like, Hey, I am living with this. I didn’t know what my rights were at that time, nor did I type a Virgo woman over here, want to ask for additional help. In terms of like, hey, like, Is there hope out there? I had a 504 plan in high school, I had some accommodations at college, but I didn’t even ask for a lot of them that I could have utilized in college. Because once more I was trying to normalize my symptoms. It wasn’t until the pandemic happened, that I was able to take a step back and see that like what was happening with me, and my health and working full time wasn’t okay, because I was working in person at a medical device plant when COVID hit. And my doctor was calling me and said, like, hey, like, we don’t know what’s going on with this illness out there. And we want you home with your medication, like you’re just kind of too much at risk, or we’re calling everyone like, please go home. My job wouldn’t let me go home. And I was like, looking, I was problem solving. And I was like, look like I understand the importance of my role. I need to physically be here. But I was modifying my job on the side. And the fact that my doctors on the phone with me, my employer is telling me that I I can’t go home, and that they have to call some HR person that lives in Texas, a completely different state than my own and figure out what the rights were in terms of me going home, and how it wouldn’t be fair to other people and all of this stuff. And I’m right, bawling my eyes out saying like, Whoa, I am a human that has a disability. And it was in that moment when I was like walking around the building, like trying to calm myself down and think like, if I get in my car and go home right now like my doctor’s stating, like my intuition is telling me Will I lose my job. A week later, everyone at the plant got exposed to COVID. And I had to leave and go tell my roommates that we all had to go get tested with COVID. And I was like, Well, I’m not going back in person, you everyone just proved my point. It was in those moments that I was like, I need to start figuring out what my rights are. And I need to put my foot down because I was like this is not acceptable for me, but anyone else as well.

Amber Tresca 13:23
Right? It sounds like you were sort of forced into it. Were you able to consider like pros and cons or have you considered it in other roles that you’ve had? And did you have any kind of documents like so how did you have this conversation with HR?

Katie Connelly 13:43
For that first company, I had to get a lot of documents from my doctor of proof of disability, and who my doctor was, which came very quickly. A doctor was very on top of that…

Amber Tresca 13:57
On the ball. I mean, at the beginning. Wow.

Katie Connelly 14:01
Yes, my doctor is amazing. But I had to get a lot of documentation. I had to have conversations with my plant manager and with HR on the phone, I felt extremely exposed. I felt devalued. And it really set the tone for me in future conversations as well. I eventually ended up working remotely during the pandemic and keeping it pretty much that way. And I advocated for like full masks when we went back and we had like a bunch of different rules. But I eventually had to quit that job due to my mental health there in that situation, and because of just life circumstances, but I gave it my all. And when I was leaving, I had realized how much of my health I had sacrificed and how much that just wasn’t at the end of the day legal that my rights had kind of been encroached upon, and that like moving forward, I wasn’t really going to do that again. I took in my next role and a pay cut an opportunity cut, because I wanted to work for someone that would be fully remote. And give me the flexibility to take care of myself and recover from that first job because I was still struggling with the burnout, and the mental health that came with it, and just the physical aspect of it. My second job was the first time I took short term disability, and my HR exec at that time, she was amazing. She was from Australia. And like, I came to her and I was I was super nervous. And I was like, I don’t really know how to ask this question, but like, I have Crohn’s disease, and I need time off from work. But I feel bad about it. And she was like, What is wrong with you Americans? She was, uh, you pay all of this money for all of these benefits. And she’s like, you’re supposed to use them, what do you feel bad about? And I was like, well, I’ll leave my team, you know, up and dry. Like, what if they don’t, you know, I was so scarred from the first experience of being told that I wasn’t a team player, if I laughed and worked remotely and all of these things. And she was just the best person for me to have this experience with to be like, take your time. You’re supposed to take it, don’t apologize for it. And it’s nobody’s business what you use that time for. She goes, if you need to go to a yoga retreat across the world and play with go for three weeks. No one’s business. She goes, You go on a cruise, a Disney cruise, if that’s your cup of tea, okay, you sleep for three months, no one’s business. She was like, literally do whatever you want and don’t feel guilty about it. That’s when I was like, wow, okay, so I’m, I need to be listening to this. And I need to really take this opportunity to learn what my rights are. So I took my short term disability, I really was able to recover mentally, physically, I was able to accept my periodontal diagnosis. Finally, because I had all of this time, like it had been years of me just kind of not processing, I was able to work through a lot of my C PTSD symptoms, and to be able to just figure out what was next. Ironically, my dream company reached out to me and they had a role open for me. So I came back to that second job and then quit. Um, but that’s also great if you go on short term disability, and you come back and as long as you know, you’re kosher with them, and you don’t, you know, whatever your motive is, I just was like, I found another opportunity. And they there was no bad blood, there was no anything, they were just fine, easiest job in the world, they should have kept it. But I went, I went to my dream company, which I felt like I was kind of like, a little woowoo sometimes, but I felt like the universe was kind of like, Oh, you took a step back, you took care of yourself now here’s like a remote job again. But in like the fun retail space, you’ll be able to kind of take an easier position once more and see what happens. But I could already tell stuff was happening with my health like it was Bose because IBD never never seemed so sleep never led. And I knew that I was gonna probably end up having these conversations that I’ve already been having in the past, again at this company, but now I was up with the question again of do I or do I not?

Amber Tresca 18:24
You have me really rethinking short term disability, which I have taken when I was a full time you know, employee, I’m full time freelance now. But because when I took it, yeah, the guilt but also like, I really needed it to recover because I was literally having surgeries. And then to go in after having one surgery and then go back to my employer, and then my boss and tell them again, I have to have more surgery. And then my boss who I could say this because he will never this boss will never listen to this. My boss said, Why do you have to have more surgery? Did they leave something in there? And I like literally didn’t know what to say that. But the thing of it is, is that yeah, it’s your time you have paid into that you should be able to take it if you need it for recovery from anything that you’re dealing with. So I love that I love that we’re saying this out loud that other people can hear I’m taking

Katie Connelly 19:31
a moment though still for that boss because I just like that’s the stuff that we get dealt with all of the time of those questions which are okay, I would rather get the question then like have someone become an educated but like really like just Google with the diseases. It’s not that hard. Like, look up how why we’re having surgeries. I just don’t get it. Yeah, yeah,

Amber Tresca 19:54
I was. I was in those days. I was very has I had no accommodations I had No nothing. And I never spoke the words in my office, I just said I needed to go. And they were receiving documents from a colorectal surgeons office. So that is unavoidable the type of specialist that is going to be communicating about your disease, they might get a little bit of a clue as to what could possibly be going on. And of course, if I was 26, at the time and a 26 year old, having a colorectal surgeon that I mean, that could be a really serious, right. I mean, it was serious, right? Yeah, putting that together, a person who was a little bit older, should be able to put that all together, but I don’t know, it is a weird thing. And it and you and you have to be prepared to your point of these unfiltered responses that are going to come at you. So I think mentally, you have to put yourself in that place, you really don’t know what they’re going to say to you. And it could be wild,

Katie Connelly 21:03
I have a lot of anxiety, just you saying that because I’m on short term disability, again, in my current role, and like having to bring it up to not just my employer, but to myself, to my partner, to my family, to my friends was like a cry for help. And it was only my decision. And I was like looking for this external validation of like, it’s okay, it’s okay. And it was me and my doctor’s decision. And like, even not even my, my doctor, so good. So I don’t know what anyone else’s experience is like in terms of telling their doctor what they need. But thankfully, for my, my own experience, she just accepts it, and fills out the paperwork for me, and says, Good luck. Let us know if you need anything, any further support with your employer. But even she started connecting the dots of Wait, I have a lot of patients that work for the same company as you, of course, she can’t tell me who and HIPAA, and but she was like, none of them are asking me for accommodations, and they’re lot sicker than you. And she sat back and she was like, why aren’t we having these conversations, and I was like, because it’s easier to quit the job than to go into these conversations, and expect the worst because we know the worst could happen. And these off the cuff comments could come our way. And I think it takes you know, community support to be like, you know, hand holding a bit and say like, you know, even if they say anything, it’s none of their business while you’re going on leave, the HR rep is going to be the only one that gets all of those documents that you know, states very private facts about why you need to go on leave, and what bodily functions you have lost control over which I was like, um, all of them, but okay. And to be able to just kind of own the fact and never apologize, like I am going on leave. You know, it’s unfortunate. But I am going on leaf. And I’m hoping to make this as easy as possible for yourself and the team. But I need to put myself first and I’m hoping that you know, giving a week’s notice two weeks notice is more than enough in this situation. And that, you know, we kind of handle it with care, because you can go on disability tomorrow, if you work in you know, full time position, you would just have to file the paperwork after the fact. But I digress on that. Yeah, it’s a hard it’s a hard conversation to have, and it’s not fun.

Amber Tresca 23:36
Coming up next, Katie gives real world advice about requesting accommodations.

Amber Tresca 23:52
Katie, you had points where you weren’t receiving the accommodations that you were asking for or that you needed? What were your next steps that you took to try to resolve and salvage the situation.

Katie Connelly 24:07
So at my current company, I came out of the toilet pretty early on, after I accepted the job. I coined that term because it’s the only way I can really handle them love it.

Amber Tresca 24:19
I can’t believe I’ve never heard it before. And I love it.

Katie Connelly 24:24
I used to say in in college too, because people didn’t know how to like tell friends and you know, have the roommate talk and I was like, you just gotta come on the toilet and just like, You got to walk out of the bathroom and be like, Don’t go in there. I died, something died. We got to have the conversation later and own our stuff. But this company just had this great culture. I was told like such a good culture like it does. And I fed into that with the open door policy and I opened the door and the toilet and I was like, Hi I have Crohn’s disease. I’m in remission right now. But I go to the doctor a lot. I have a lot of appointments weekly, if not monthly. What does my sick time policy kind of a lot for that? Do you want an email? Do you want documentation every time like, I just want to have this conversation now, my manager was like, You know what, great open door policy. Don’t worry about it. It’s not your fault, you have this disease. And I was like, wow, she’s like, don’t take PTO. You’re very flexible. Like, just email me the times, throw it on your calendar, you’ll be good to live in the dream. Well, three months into it, I could tell I wasn’t going to be living the dream for long because management had changed. And I thought it would continue in my favor. But it started to become more of an issue where I could see my own symptoms getting in the way of work, which is hard to accept, especially when it’s C PTSD symptoms and mental health symptoms. And it just kind of you kind of gaslight yourself out of them. You’re like, no, no, like, it was a bad day. And I started to pick up on the fact that I was getting so overwhelmed with my symptoms, I was breaking down in meetings, crying, because I was just felt like no one was listening to me. And if you’ve ever had an anxiety attack, you just stumble over your words. And the I was either too much in pain or just like in my own downward mental spiral that I it’s a professional setting. What am I going to say? Like, my trauma is popping up right now. And I’m getting the poops from it. And I can’t make these meetings about Excel spreadsheets because I don’t care. Like it’s it’s a hard conversation. And it’s a hard thing to I’d only worked for medical companies prior to this. So to talk about like, retail and have like these, like corporate nine one ones, I was like, No, like I I’m having a hard time conceptually understanding lists, especially with the open door policy. I was like, wait, I’m crying. And not that I expect someone to hold my hand. But I expected someone to follow up and check in on me and no one was, and I started to blame myself more and more and more. And my therapy was becoming more and more about work and not about my actual issues that I need to work through. Yeah, and that’s when I was like, I need to ask for the accommodations and I need to start this process. I talked with HR, they said that cuz the open door policy, I didn’t need accommodations and writing. And I was like, oh, okay, yeah, I started to see more things slip in my work. And I started to get different documentation, you can always sniff out in corporate world when you’re going to end up on a performance review or PIP of any kind. And type A Katie was like, whoa, whoa, whoa, whoa, what do you mean, I am very smart, I am capable. I’m just flaring up. And I was explaining that to my manager being fully transparent when I didn’t need to, because that’s what I was being told to buy EHR. And I was starting to smell that. This wasn’t right. So I started to Google, like, what are my rights? I was like, what? Ada? What, what do we do here? And I found out that everything they were telling me was against my rights, you don’t need to be in an active flare, you don’t need to have had any current symptoms for years to get it in document in documentation that you have a disability of any sore, it is our legal right to get that written down. And this company kept telling me, No. So I asked for hrs manager, and I had to start the battle of I’m going to file for these accommodations, what’s your process? And I don’t think they had one, because it took them a long time to figure out what that process looked like for them, and how to start it. And I was like, This is ridiculous. So my therapist told me that there’s a website called Ask Jan, job accommodations network.org that you can go on and search as an employer and for employees to look up any disease you have. And it shows you accommodations that have existed across corporations, for that employee to be able to excel at their job. Because the whole point of accommodations, which is what I was missing, was that there are tools to help me succeed. And to help me keep my role at the job. I have already made so many concessions in my life with my disability. Why does me having a career have to be another one? Because a company does not want to follow a legal right and supply me with what I need, which in my instance, what I needed was written instructions on different projects or if there’s going to be a different workload and to be able to go back and look at that documentation. So if I was spiraling in my mind, I would have a reference point. Or if I blanked out for stomach cramp or something’s going on on leakin, I, I’m not listening to anyone else I’m in my own head. So if you write it down, which you could anyways, not that hard, I can look back on it and be like, Oh, I did miss hear that, or Oh, I was spiraling simple stuff. And then to be able to leave a meeting, without comment, just to be able to exit. And for my boss and I to have a virtual signal that I was going to get it going to back out. And that I would have up to like an hour or even longer of breaks, where like, I wouldn’t, I would just tell my boss, hey, I need time to calm myself. Oh, and feedback written down just so like, I didn’t have a spiral if I was having a bad day to get feedback, because like, that’s my right to receive feedback I want to, to me on is like, Oh, these are all very like casual accommodations, like super like, to me, I was like, just easy. But I was having such a hard time with my managers, just even accommodating me with telling them that. So that’s why I wanted to document it. And it took 11 weeks for the process to be completed in full after filing my paperwork. So I had to do all the research on my my own with asked Jan and with my doctor to figure out what was going to work for me, submitted the paperwork had to expose my entire life story. I felt like to HR Yeah. And then for them to take 11 weeks and to not communicate with me properly as to like what was going on. I felt super exposed and vulnerable. Throughout all of that time, I felt like I was gonna get fired, even though I knew, like, legally, I couldn’t. But like doesn’t mean I

Amber Tresca 32:00
could still happen. I think

Katie Connelly 32:02
I can still happen. Yeah. So it made me really question what my role is at this company, because if the culture is so good, and my benefits are great, what concession does that come out here because obviously, they weren’t equipped to deal with corporate, reasonable accommodations. And I spoke out about that to numerous executives. And I was like, I think we need to have a discussion here. And we did, but they wanted me to do like free consulting for them. And I was like, I’m sorry, but I don’t have a degree in this, I would love to explain to you what I’ve learned. But unfortunately, I’m not the HR person here. And I would love to get paid extra for this consultation. So I don’t, I’m not telling you, you know how to fix it. I’m telling you what was wrong with my experience. And they’ve handled it. Okay, since then. But a few weeks after my accommodations were put into place, they told me that my fully remote role, it was no longer remote. And I live three hours from the office one way. And I’m told now that I have to go in once a month, and it’s just once a month. And the fact that they say it’s just once a month, and they list all the other people that are doing it, I don’t have it in me to explain to them that they’re discriminating against me once more, because they never asked if I could drive six hours in one day to go play team building skills in the office. And so 11 weeks of my accommodations for, for what they’re important. But they do come at a cost sometimes. But I’m happy that I have them in writing.

Amber Tresca 33:43
I think and that brings us to my next question, because I think you have pointed out some very salient points. So I’m going to ask you if you have any more for employees, okay, who feel overwhelmed by the idea of asking for accommodations? What advice do you have for them? And I’m thinking of this, that you’ve had such a long up and down journey with this, that you’re the perfect person to say, this is what happened to me. So don’t do it this way, or this is what worked. So just in general, what kind of things should people avoid? Or what should they include when they’re going through this process?

Katie Connelly 34:23
Always wait a hot second, to understand what your job role is. And what’s going to be the challenge for you because the more you understand what is expected of you in your actual role, the better equipped you are to state what you’re going to need. If you already walk in and know what you need. You’re lucky because it took me a second. You have to be able to understand, okay, if I flare up, what could that prohibit in this role? On a bad day on a future date, and this is a lot of work to even start this thinking process. But if you’re already at that point of being nervous of having those what ifs, you might as well go all the way with the what ifs and prepare for that worst case scenario, even if it might never happen. Because who knows, the human body is miraculous. I never recommend vocalizing anything to an employer, even if you have a great relationship with your manager. Anything that’s vocalized, without written communication can be used against you don’t mention going on short term disability don’t mention the thought of having accommodations put into place. In all honesty, it’s not your managers, right to know that they’re basically Yes, yes, it’s not, they don’t need to know anything. And it’s better to ask for them through the writing than to be like, oh, I need X, Y, and Z and say, like, the conversation went so great, when in reality, your boss might ruminate on that and hear from their boss that they actually can’t afford that accommodation, or the discrimination starts to happen, the unconscious bias, I always say, then go on to ask jan.org And to look up your disease and to look up what accommodations are there to also better prepare yourself for the conversation that you’re going to have to have with your doctor about what accommodations and help you need at your job, your doctor needs to be understanding about that. And if they’re not, then that’s a sign that you also need to change your doctor and leave. Because the doctor needs to help you as well, to provide for yourself and to be able to provide for all of your financial hardships that you’re facing with the disease. So to get the accommodations in place to help you keep your corporate job and your corporate benefits is the most important. And if you don’t have that resource, look for a different doctor. Because that’s, that’s already a bad, bad path. Ask each are for paperwork, like what the paperwork looks like for accommodations, and receive it from them, get it from them or see if it’s even on the company’s network, like usually people have like a company website for internal employees, where they’ll have all the resources, sometimes they’ll be there, I recommend looking at that paperwork to also prepare for the doctor’s appointment, and also to be prepared of what the company is going to push back on potentially, or what kind of further documentation they’re going to need as proof of your disease. Reach out to your network. If you have other IBD friends who have had similar health journeys as your own, I think it’s helpful to be like, hey, what was helpful for you? What time off did you need? It’s not going to be the same for yourself, but at least getting a gist of like, How many times have you been on disability? What does that process look like for someone with IBD? That always helped me. And I think the more we talk about it with each other, the more common it’s going to become, especially with the phenomenon of going back into office and working fully remote. And the disability community is once more forgotten about in those conversations, because going back to work and going back into Office is trying to build back this norm that we were never allowed into to begin with. So that man accommodations still goes back to working from home. But that is not enough as an accommodation. And I encourage people to not accept that as the bare minimum and to push for even more accommodations. Because we should have always been able to work from home, and then rely on your support system, because it’s going to be a hard conversation, it’s gonna be a hard path. For me, it was 11 weeks long, I was just asking for accommodations that I felt would help me and my boss communicate better, and for me to be able to do my job fully. So obviously, it’s not easy out there. And we still have a lot of work to do in order to get reasonable accommodations more readily accepted and less discriminated upon. Give your employer resources and it’s their fault if they don’t look at them.

Amber Tresca 39:03
I agree with that. Sometimes I’m like, Why does anyone ask anyone a question ever? That’s they can find out on by doing internet search. I feel like sometimes people forget that they can type it in and get a reasonable answer. And if they have even a little bit of critical thinking skills, they can determine which are the best sources to get the information from, and then they can proceed from there. I don’t I don’t quite understand why they would ask you anything when it is not your job as you have already stated. And so, with that in mind, I’m going to ask you a question which you have been asked by your employer to basically consult for them and I I feel that very deeply because there are so many points in the IBD journey where we are asked to educate people that it is is not our job to educate them about this, they should utilize other resources. But I’m gonna ask you anyway. So for employers, what kind of advice do you have for them when they are working with their employees on accommodations?

Katie Connelly 40:16
For me, I tried doing this with my own employers, I kind of held their hand through the process and was like, you know, you’re doing a good job, sweetie, like, You’re being very transparent with me, you’re asking all the right questions like, I was very, like, helpful. I was like, Oh, of course, of course, you guys didn’t know what to do during those 11 weeks, if you should have asked me stuff or whatever. At the same time, I am such an anomaly, I think. And I feel that I just have such a passion for educating and sharing with others that I’m okay with doing that. But it’s not fair for the regular patient to be like, hey, like, what are we supposed to be doing here? No, you as the employer had the responsibility to Google and be able to look for the resources that you know, ccfa has the Crohn’s and Colitis Foundation of America, they might have resources for employers, you can look up other blogs that other employees have created about their experience with work and, and IBD. And trying to balance it, you can find anything on ask jan.org I think that’s our best accommodation resource right now. Which is unfortunate, because I think that there could be something bigger and better and more fun, you can go on. There’s an amazing new company out there called dis glow, di es si c l o, they created software that they are giving out to corporations for a combination process. So it’s easy for the employee and the employer, which is wild concept, you just go into the software, and you apply for your accommodations. And then the employer knows how to process them through this whole software system. Thankfully, we’re ending up closer and closer to hopefully streamlining it and making it not just more accessible, but easier for everyone involved. I always say tap into your humanity. And if your employee has the gumption, or the desperate need to communicate their needs to You Be a human, and do what you can to keep them employed. And it doesn’t matter what your boss wants from you, or whatever the organization wants. You tap into your humanity and in just a human sense, just a human set, and then help them the best that you can and fight with HR if need be. And if that’s too much for you, then you shouldn’t be a manager for humans. You should go be a manager for robots.

Amber Tresca 42:44
I think that is going to be a job as being a manager for robots. Yeah. All right. So you’ve mentioned a lot of great resources already, that employees and employers can go to patient advocacy groups, such as Crohn’s and Colitis Foundation, there’s asked Jan, which sounds like an amazing resource that I didn’t know about until I met you. Is there anything else that you used or that you would recommend to people?

Katie Connelly 43:12
No, ask Jan was my go to my Bible. And then I learned about like, disclosed through like LinkedIn, I started like networking just to see like, hey, what else am I the only one out here that like saw that accommodations on the corporate workplace is sour. And I saw that there’s a lot of advocates out there talking about this, which gave me hope and more power to fight for myself, because advocating for ourselves is obviously a full time job that we are already forced to do in terms of our own health care, and our own medical care and financial care, and all of the things that come with IBD all of its beautiful accessories. But I think that we just need to be able to also have those advocates in the workplace and to be able to full heartedly be able to connect the dots, the Instagram community. I know not everyone has Instagram. But I think it’s very heartening to see that there are so many IBD advocates out there now who will talk to you just as like a support system. And we’ll just kind of be that pat on your shoulder to be like you can do this. And sometimes that’s all you need to help support you through your advocacy work is to have that fellow shoulder to say like, yeah, this really sucks. Because there’s no one that should be saying, hey, it’s great. It sucks. You just need someone to hold your hand sometimes and have that support as well. So find your your battle friends online, and hopefully, they can help. Especially everyone that’s in a different country. I always I find it so funny because I’ll be like, Oh, I have to work because of my medical insurance and they’re like really enjoy your job. And I’m like guys, it’s not that easy over here and they’re like, just quit your job.

Unknown Speaker 44:52
Yeah, I can’t,

Katie Connelly 44:54
but it’s inspiration to take the the anger and turn it into fire and try to change some Think about it, because that’s all we can do.

Amber Tresca 45:02
Yes, that is what we can do. We have control over ourselves. And then I am big on activism. And so we need to go to our elected officials and let them know what our issues are and how they can help us solve them, which is a completely different topics. So I won’t continue in that vein. But in any case, so Katie, I want to know more about you. Yeah, I want to talk to you a little bit more about yourself. I do my research before I speak to anybody on my show, that usually includes some diving into the Instagrams. So tell me some more about your cat. Your cat has made a few appearances on Instagram feed. And I want to know more you told me before we started recording that you had to kick the poor kitty out of the room, which I had to do the same. So tell me what you love about your little,

Katie Connelly 45:54
your little furry friend, Mo furry friend, her name is Katara. And if anyone’s watched Avatar The Last Airbender, she’s a waterbender on the show. Fun fact, I rescued her and she picked us but she just like has this personality that like, I never seen it in a cat. She just talks all the time. Everyone says like, oh, it’s because of you and your partner. And I’m like, that’s really offensive. I feel like we never talked. Um, it’s obviously us. See, we were always talking back to her. So of course, she’s communicating with us. She just wants love and attention and play all of the time. But she’s been our our best little emotional support buddy up here. Because we live very far away from all of our friends. So once we rescued her, she really made our partnership a complete family. So Oh, that’s so sweet. A little fur baby. Yeah. Very attached.

Amber Tresca 46:48
I didn’t know until just a few years ago. And I think it was my husband that read it somewhere that cats don’t vocalize to one another. That’s not how they communicate. If they’re vocalizing, it’s for

Katie Connelly 47:03
us. I know. And I’m like, I’m like I heard. She’s just like, she has different sounds like we’re always like, if she makes a new one, you’re like, whoo, noise unlocked. We’re like level 57. We’re on here. And she has her own babies like her own little toys that she like, has turned into her babies. So she’ll carry with her throughout the house and feed. And yeah, it’s really strange, but so endearing at the same time.

Amber Tresca 47:35
Hmm, I’m going to make a case. For more Instagram videos of the cat. I’ve just kind of

Katie Connelly 47:43
I do get requests about that. I do get requests. She wants a fancy feast partnership. She’s really been trying for that. But we also told her like we’re paying her rent, we’re paying her food, like she’s got to kind of start paying her own bills. You know, it’s very expensive. Very expensive. Yes,

Amber Tresca 47:58
Yes, I say that to my cats. And my kids, they all the time. I reserve the right to monetize you at any.

Katie Connelly 48:11
If I can make money off you, I’m going to,

Amber Tresca 48:13
I’m going to do it, I’m going to do it no shame. Katie, it has been such a delight to get to know you better. I applaud everything that you are doing out in the community, the things that you are able to share with us and the things that you are doing behind the scenes, which sometimes, and I know this as well, you’re asked not to share quite as much, but you’re out there doing them. And I wish you every luck, every joy along this journey as you deal with IBD. And thank you so much for giving our listeners just an incredible amount of hard won information about how to cope with accommodations in the workplace. The last thing I’m going to ask you is that where can people find you online so that they can connect with you.

Katie Connelly 49:00
So you can find me on all social media handles as bad with a bad because that is my handle and my trademark. And then you can find me on Spotify under the same name. I have my own podcasts that I’m going to start re recording episodes on. But if you wanted to hear more about my periodontal journey, and my clinical trial story for that as well. I have shared a couple of episodes on that exclusively. And yeah, you can catch me on Instagram with Katara all the time as much as possible. She loves recording with me.

Amber Tresca 49:33
Yeah, whether you want her to or not. Yeah, I’m aware of that phenomenon as well. So I’m just gonna say in case I have to bleep it. I’m not sure if I do or if I don’t. It is B A D. A S. S. That is the word in case I’m having to believe it. So. All right, Katie, thank you so much for coming on it’s been such a pleasure.

Yeah. Thank you.

Amber Tresca 50:04
Hey super listener. Thanks to Katie Connolly for bringing us her experience in navigating the accommodations process. And in learning from how both she and her employers handled the situation. The pandemic did show us that working from home or a more comfortable location is possible in some industries. Forcing people back into an office or monitoring them from home by using invasive technology is not the best way to keep your employees, especially those who live with a disability. People with IBD make great employees because they actually work harder, because they have an idea that the disease makes them less desirable as an employee. Well, I’m here to tell you, people with IBD are worthy and make great employees. The adverse experiences that people with this disease must face give them a unique perspective that is important and valuable in any industry. As always links to a written transcript. Everyone’s social media handles and more information on the topics we discussed, is in the show notes, and on my episode 156 page on about ibd.com. One point I want to make is that Katie’s Instagram handle contains a word that I had to bleep out for this show. So please do look at the show notes to find her quickly. Thanks for listening. And remember until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio. 

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