top of page

Is Interstitial Cystitis a Disability?

Updated: Dec 7, 2022

This is a transcribed version of episode 18 of the IC You Podcast. To listen to this episode, click here.

Hosted By: Callie Krajcir

Featuring: Ashley Jacobson

(Callie:) Today I have Ashley Jacobson with me and she is a disability and civil rights lawyer. So can you share a little bit about your IC journey?

(Ashley:) I was around 19 and I was starting to have all of these weird symptoms that I had never had before. I was having abdominal pain, I was having to go to the bathroom a lot, and I was becoming really sensitive to foods though, I hadn't determined what type of food or drink was the issue yet. I just assumed that I kept having these UTIs but the tests all came back negative. I wound up going in for surgery for a laparoscopy for endometriosis, which they suspected after I made them suspect that that might be it, and they found endometriosis in the surgery. I thought, now I'm going to be feeling so much better because they're gonna remove the endo cells and I'll be fine. I wasn't improving. A few more months go by and I'm seeing all these different specialists. Ultimately they did a bunch of tests and determined that I had IC. I'm adjusting to trying all these new treatments, like medications and bladder installations, so it was a big adjustment period, but my pain was honestly the worst symptom for me. It got so bad that I wasn't able to sit up straight. I wasn't able to sleep through the night and it got so bad to the point where I couldn't even walk to the bathroom on my own. I had to take some time off of school. Luckily my university, Western Michigan University, allowed me to finish my last year of college online, but it was really, really difficult at first. Adjusting to the diet, the medications, the treatments, and being a fairly young person, going to the urologist with a lot of elderly people and feeling kind of misunderstood and not represented by anyone.

(Callie:) I can relate to that completely. I went to my first urologist at 18 and I felt so out of place there and everything after that, it is a strange feeling. Going through college with these symptoms, it's not fun.

(Ashley:) Well, for me at least with my IC, I can't have alcohol. I found I was being excluded from a lot of things for the first time and I looked on the outside to be healthy. So it was difficult for a lot of my friends to understand. At the time I was dating somebody and I was living with him. We'd been together for four years and when I got sick, I mean, he just could not handle it. He didn't want to go to the hospital with me, and wanted nothing to do with it. Like, he didn't want to miss watching the hockey game on TV. So I mean, I dumped him, but yes, it was definitely a huge adjustment in my life. It turned my life upside down and I got so bad that I was in the hospital once a week at one point. I ultimately researched a ton online and I went to the University of Michigan where they were doing a study for IC. That's what connected me with my surgeon who implanted an experimental device in my spine that helps with my bladder pain and other bladder symptoms.

(Callie:) How are you doing now?

(Ashley:) I would say that since I got my device implanted initially in 2012, it drastically improved my quality of life. My daily bladder pain is still around 5/10, but it was a 10. I'm able to work now, I'm able to go to the grocery store, and enjoy doing some of the things I like to do. I'll have flare ups every now and then where the pain will go up and I will have to readjust my medical device, go back on the bladder installations for a while, and be a little bit stricter with my diet.

(Callie:) It's tough when you have to do that with your diet. We are such a food centered society and the majority of people I talk to with IC, they tell me, oh, I'm a foodie, just like me too. So what made you become a disability and civil rights lawyer?

(Ashley:) Yeah, so when I first got diagnosed with IC I wanted to be a teacher and work with children with disabilities, but then I realized I can't stand for eight hours a day and teach and run around. I started really thinking about how I could still pursue my passions in a way that worked for my body and my health needs. So I went to grad school for disability counseling and assessment to be a therapist for people who are sick and have other forms of disability. So many of my counseling clients were dealing with legal issues and I kept trying to find lawyers in the community that had a good background on disability, things like social security, disability benefits, which are important, but how you should accommodate any area of law to somebody with health or disability needs. The way that we interact in the world as people with chronic illness is very similar to the way non-sick people operate in the world. People with disabilities still need legal help with the criminal justice system, with divorces, PPOs, and anything else. I couldn't find a lawyer to help with even those things for my clients that had disabilities. So I thought somebody should do something about this. Ultimately I had a client who called the police for help when she was mugged and when the police arrived because of her disability, they couldn't understand what she was saying. They actually arrested her. I didn't find out about it until after she already took a plea deal and then nothing could be done. That was what made me sign up for the LSAT. I really wanted to create a law office that works with people with disabilities, whether it's what I have or what other people have, because our legal system is just not handling things well, right now and so that's ultimately what I did.

(Callie:) How long have you been doing this? What does your day to day work look like?

(Ashley:) Yeah so almost five years. I mostly represent people in employment and education law, so I work for myself, which is also great. I created Jacobson Law and Advocacy, and on the side I used my counseling and consulting background to do workplace training. With my law office, I typically take on cases where somebody comes to me and they say for example, I have IC and I'm not getting enough bathroom breaks at work, my work supervisor's telling me I can't go to the bathroom more than a couple times a day and it's not working out, I'm worried I'm gonna lose my job. Or they might say, I have a cystoscopy coming up and I am being told that I can't have surgery or I'm gonna get fired. And so my role is to make sure their disability can be accommodated in the work setting. Maybe you're in college and you need a little bit of time off, or you need to reschedule a final exam because of a health issue. That's another common thing I see, but really identifying ways that you can stay on the path you wanna be on while meeting your disability needs. My day is doing a lot of phone calls with clients, going to court, we have a lot of remote court hearings right now, I also represent a lot of kids who get in trouble with the law because 60 to 80% of kids in our juvenile system have disabilities. It's been very steady work, I love what I do, and I feel like I can really empathize with my clients and what they go through because I've been through it too.

(Callie:) Do you have any other disabilities aside from IC that you're open to talking about?

(Ashley:) Yeah, I also have lupus that was diagnosed a couple of years ago and that affects my joints a lot. I get joint pain, fatigue, and overall kind of feeling crummy sometimes.Then I have the IC, and then I have endometriosis. Growing up, I could see that my IC was starting to show up sooner than I recognized it, but I grew up really athletic so it was a difficult thing for me to wrap my mind around at first.

(Callie:) Right. I was an athlete too, and I feel like I just had to push through my symptoms because I didn't know anything else, and that was tough.

(Ashley:) Yeah, then you feel like you should push through, but then you regret pushing through when you overdo it. It's always a balance.

(Callie:) I remember the only accommodation I ever asked for was in college. I played volleyball at college and we have to wear spandex, which is someone with IC’s worst enemy. I would have a flare after every game, every practice. So I asked my coach, can I please just wear running shorts? So she asked whoever the person was to ask about that.They were like, oh, well you're supposed to really match your team, so you're gonna need a referral from your doctor. At the end of it all, I was like, this isn't even worth it. I'll just suck it up and wear the spandex. That's how that went.

(Ashley:) I definitely was the same way, even when I was in grad school for counseling people with disabilities at this amazing program. They were for the most part amazing, but nobody had really talked to me about disability rights in the context of chronic illness until I sought out their university disability resource office, which I wound up eventually working for. I think even in my mind back then, I thought I had a lot of understanding about disability, but I still hadn't really pictured the variety and the diversity in the disability community like I do now. A lot of people don't even realize that chronic illness qualifies as a disability. Not just with disability benefits, but in a university, like what we, what you went through.

(Callie:) Yeah, that kind of takes me into a question I wanted to ask you, which is, is IC considered a disability?

(Ashley:) Yes, it is. So technically there are many different definitions of disability, but under the law in the United States, and a little disclaimer, definitely check with a lawyer in your area this is educational in nature. But there are many different disability rights laws in the US. The big one that a lot of people know about is the Americans with Disabilities Act. That defines disability intentionally in a very broad way because our government and our legislators determined back in the late eighties, early nineties, that so many different people were affected by disability discrimination. So you are considered to have a disability under the ADA. If you have an impairment that significantly affects one or more major life functions. So grooming, moving physically, mobility, eating, drinking, voiding, working, all of those things would qualify under that first prong of the ADA. With IC, like if you are having urinary frequency and urgency, difficulty voiding, bladder pain, fatigue, if you're on a low acid diet, all of those things would allow you to fall under the definition of disability and they afford you disability rights in the US. The ADA covers more than that, but that's usually the prong that people fall under for IC.

(Callie:) I really don't know a whole lot about this, so what are disability rights? What does that mean, Disability rights?

(Ashley:) Disability rights address inaccessibility and discrimination in many different environments. So school transportation, in the workplace, in the community. They're a form of civil rights where you wanna make sure that you are creating access and you're removing barriers. One way that we do that is through reasonable accommodations. These are ways that we address these barriers in schools and workplaces and in the community. It's a way to try to address some of those issues so that everyone can access their school and their job without having to worry that their disability is gonna be discriminated against. So reasonable accommodations for someone with IC that might look like access to the restroom when it comes to the frequency of bathroom breaks, or it might mean having a desk that's not too far away from the bathroom, it might mean having a special place to hold your medication where you can lock it away. Especially if you have pain medication and you're in a shared office setting, it could mean being able to go to doctor's appointments without being penalized on the job, or in school rescheduling things that can be rescheduled when appropriate. The main thing you're looking at is not just the cost of the accommodation to determine if it's reasonable, because most accommodations are free, but is it an undue burden on the school or employer? and in many, many cases, it's not okay.

(Callie:) So what does the process of applying for disability benefits look like?

(Ashley:) So for disability benefits, you wanna make sure that you do a couple of things as swift as you can if you think that you're going to need them, apply sooner rather than later. Especially now the system is so backlogged. It could take 16 to 24 months to get approved. I mean, we're talking potentially years depending on the state. A big part of that is that there's a really, really high chance that you're going to be denied when you first apply. Very often I'll tell people if you think that you need it apply, but don't be deterred if you get denied.

(Callie:) Why is there a high chance of it being denied?

(Ashley:) Essentially disability rights are a given in this country, but disability benefits are only for those who cannot be substantially gainfully employed. So that sometimes is confusing. Disability rights, things like accommodations in the workplace, accommodations in school, the right to not be discriminated against, that's a constitutional right. Whereas disability benefits were created as a program to help provide funding to people who are unable to work. So there are two separate systems, but people who are dealing with disability benefits still have disability rights. People who have disability rights might not be eligible for disability benefits. Essentially when you apply for disability benefits, you need to show documentation that you are not able to be substantially gainfully employed. There are a bunch of different things that factor into that. One big one that tends to be easier for people to understand and to implement in their own life when they're thinking about disability benefits is, am I capable of maintaining a job or I'm making more than $1,300 a month? If the answer to that is no and you can provide medical documentation, you could qualify for disability benefits.

(Callie:) So can we do a hypothetical? If there's a person who just was diagnosed with IC, they were working a job, but the pain is just too much. They can't make it to work, they can't work because they have pain. What would happen with that person? What would they need to do? Would they have to file for disability benefits?

(Ashley:) So they would want to go to the social security administration website. The initial application for disability benefits is not as exhausting as the application or the appeal of that. As you're going through that, think, can I work a certain number of hours a week in a different job with my educational background, with my health needs. It really can't hurt many people to apply for disability benefits either way, because if you get denied, then you tried. Ultimately you want to apply, gather as much documentation as you can, don't be discouraged if you're denied at first, and if you are denied, definitely seek out an attorney in your area who can fight that you have a much better chance of winning on the appeal then if you were to go at it alone.

(Callie:) Okay. So my next question would be what if they can't afford an attorney because they're not making money?

(Ashley:) So a lot of lawyers that practice in that area of law take it on what's called a contingency fee basis, where you pay if you win. So if you receive benefits and that's granted to you, then a portion of that would go to the lawyer that helped you get that. Even if you're approved for disability benefits, you're living below the poverty line. So when people say, oh, there's so many people out there that scam the system, it's not true. It's incredibly difficult to get approved, especially on your own. And you're making just enough to cover most or some of the essentials. That's something that I combat a lot is the kind of stigma associated with that. So the trend is a little bit alarming that we're having to fight more and more for people with disabilities than we used to, but there are also so many great disability advocates out there.

(Callie:) My next question would be, is there a certain amount of time somebody has to have a condition that qualifies as a disability in order to be eligible for the benefits?

(Ashley:)There's not really a set period of time. It's about the permanence of your disability. For example, a lot of chronic illnesses don't have cures, where you're always gonna have symptoms, but it's about the ups and downs of managing them. Those are typically easier to show that it's a permanent condition that could make you eligible. Whereas somebody who has a condition, like let's say they have a lower stage cancer and they have a pretty good prognosis for recovery and being able to eventually return to work, those cases can sometimes be more difficult to become eligible. But additionally, it's not usually about the time that you have it. It's about the severity.

(Callie:) So you would just need documentation from your doctor? Is there anything that can strengthen someone's case?

(Ashley:)Absolutely. So documentation, not just on your own, but making sure that your doctor is documenting at each visit, what you're logging, is huge. Making sure that you're careful about what you post on social media. There are all these misunderstandings, misrepresentations about what it means to have a disability, how that invisible disability isn't invisible to the person living with it, even if other people can't see it. So documenting your symptoms and documenting how it affects you on the job or in school will be really helpful.

(Callie:) If somebody asks their boss for an accommodation to use the bathroom more when they're working and their boss doesn't grant that to them, like what happens then? What can they do?

(Ashley:) The first thing you can do to protect yourself in that scenario is to make sure that when you request it, or you follow up in writing. When you disclose that you have a disability of any kind, it can be very nerve wracking. It can be uncomfortable. I've certainly been there in workplaces myself. I often advise my clients that you wanna prepare yourself for starting that conversation in a way that sets you up for the most success. Not only for getting that accommodation granted, but protecting your rights if they push back against it.. Going to HR, if your work has a human resources department and if they don't, even just submitting that documentation in writing and the documentation at that point just has to be an email stating I have this condition. Like I said, always check with a lawyer in your area. And then obviously pursuing a lawsuit is another option. It just takes a little bit longer.

(Callie:) Yeah, that makes a lot of sense. So the next question I have is for someone who is interviewing for a job and whether or not they should be disclosing their IC or their potential need for an accommodation, how do you recommend people handle that everybody is different.

(Ashley:) I will say it's always up to you, whether or not you disclose. One benefit of disclosing is that you're typically given a better chance of feeling out whether or not the employer's going to treat you well as an employee with a disability, but a big negative of doing so is that hiring discrimination is incredibly high for people with any disability. But it's totally up to you whether or not you disclose, but you will need to disclose in some way, if you request disability accommodations. You'll deal sometimes with employers who don't realize how discriminatory they're being in an interview, or when you start a new job. It's okay to process those feelings and feel angry about it, those feelings are natural, but just know that if they say those things to you, that's disability discrimination, that you can have legal options to pursue. You could even potentially pursue a lawsuit under the Americans with disabilities act, depending on where you're employed. Every state has a free agency, I usually recommend checking that out.

(Callie:) So I have two more questions. If someone is working and they are starting to miss a bunch of days of work because they're having flares or their symptoms are really bad and they were just diagnosed, can they get fired because of that?

(Ashley:) Potentially. The best thing that you can do to prevent that from happening is to disclose your disability and request accommodations. When you request accommodations and inform them of your disability, you're protecting yourself from potential termination because they're required to work with you and see if reasonable accommodations could be implemented. And if they deny those or you inform them that you have a disability and they fire you, it's even easier to take legal action against them. I would say definitely if you're worried about that, if you're missing work more frequently, that's where disclosure of your disability is more to your benefit.

(Callie:) All right. So last question. I see bathroom cards, are they legally enforceable?

(Ashley:) For the most part they are, but typically that’s one way of disclosing your disability and requesting an accommodation is to say, I have this, I have IC, I need access to the restroom, businesses, and places in the community. Even if you're not working there, if you disclose to them that you have this condition and they deny you, they could face legal action for disability discrimination. If you're an employee and you are showing the card, or you're a student and you're showing the card and it's something that is gonna happen more than once, they're probably still gonna require you to do other documentation as well, to say that you have a condition that requires the accommodation, but don't feel as though that documentation needs to give away every detail of how your IC affects you. It basically just has to say that you have a condition that qualifies as a disability. It affects you in the following general ways, like you need access to the restroom. In most states the ADA basically wants to ensure that you have equal access to public accommodations. So every state or most have passed some type of restroom access act as well, where essentially, if there's an employee restroom and you inform them that you have a disability that requires restroom use, you should be given access to the restroom, and if you're not, you could potentially take legal action. Those IC cards can be really good for that. So if they say, oh, you have to buy something, just say that you need access to the restroom under disability rights laws. Usually they get scared and back down and just let you use it anyway. So it's just a power control thing for a lot of people. It's also a lack of education and awareness of disability and how diverse that can be.

663 views0 comments


bottom of page