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Does your IC make it difficult to work? You have rights under the ADA!

Twenty five years ago this month, the American’s With Disabilities Act (ADA) was passed to stem the tide of layoffs and overt discrimination that occurred (and sadly still occurs) in workplaces across America. Earlier this month, I blogged about IC hero Bard Alan Finlan who spent years struggling with Verizon over his request for reasonable accommodation at his job, including asking for restroom access and a transfer to an office nearer his home. We became IC friends because we shared a common history

I, too, was involved with a five year long struggle for my rights as a disabled employee. I was working for a non-profit organization that decided to terminate only employees on disability leave. In my case, this happened while I was having all of the diagnostic workups for IC. My supervisor later revealed, in deposition, that she never bothered to read the articles on IC provided by my physician. She never believed that I was ill. What could be more direct harassment than an employer saying “You don’t look sick. You must come from weak stock”… a veiled reference to my parents and heritage? I was stunned speechless.

Both Alan and my stories pale in comparison to what IC patient Sue R. went through. In a devastating phone call, she shared that she had worked for a Japanese auto manufacturer in the midwest. She endured appalling discrimination when her male supervisor demanded that she demonstrate how she self-catheterized to a room of other male managers. Really? Really!

There are many more stories of discrimination out there in the IC community. Sadly, many employers continue to believe that disabled employees are a liability. I, on the other hand, believe that disabled employees are often harder working  because they know what it’s like to not be able to work. Believe me, IC patients want to work if their health allows them which is one reason why I actively employ IC and/or pelvic pain patients here at the IC Network.

Common Reasonable Accommodations

The ADA is a federal civil rights law designed to prevent discrimination. It empowers disabled employees to request reasonable accommodation to make their work more accessible and, if discrimination occurs, to file a complaint and seek damages.  Typical IC patients may ask for increased restroom access or, perhaps, an office or work station closer to the restroom.  Teachers with IC will often ask for a classroom nearer the faculty restroom and as long as that accommodation doesn’t cause economic distress to the business, it should be granted.

For patients who require a weekly physical therapy or doctors appointment, you could ask to come in one hour early so that you could leave an hour early or vice versa.

If sitting is painful, one reasonable accommodation could be the use of a “sit-stand desk” or a better chair. If commuting is the problem, you could potentially ask for a transfer to an office nearer your home provided that one exists. Of course, a classic accommodation is to allow someone to work from home for one, or more, days per week.

The major caveat is that the accommodation cannot put the business in financial jeopardy. The Equal Employment Opportunity Commission shared that most accommodations are not expensive. One fifth costs nothing. More than half only cost between $1 and $500 with a median cost of $240.

Interview Do’s & Don’ts

If you’re looking for a job, your employer may NOT ask questions about your health and/or disability nor can they request medical examination until AFTER you have been offered the job. They cannot ask how you became disabled, what medications you use or any prior workers compensation history. They should be asking about your education, training, skills and your past work history. They should also ask if you can perform the essential functions of the job.

While your first intention might be to disclose your IC, most believe that you shouldn’t. This is usually only done AFTER a job has been offered AND accepted so that they can’t silently exclude you from a job because of your medical condition.

Please note that the employer can ONLY withdraw an job offer if it becomes clear that you can’t do the essential functions/tasks of the job or that you would pose a direct threat to the health and safety of others (i.e. such as someone who has frequent seizures shouldn’t be operating heavy machinery). They should not fire you for asking for accommodation but they may ask for more information.

On The Job Challenges

Once a job is offered and accepted, you can begin the disability process at any time. I would suggest beginning the discussion with something easy, such as: “I would like to to ask for a minor accommodations. Due to a disability, I will need access to a restroom.” Some patients might bring a doctors note that describes work restrictions. But if you don’t ask, they don’t have to provide you with anything. The employer may then request some additional information and more specific information. This is when a doctors note comes in very handy.

I’m always surprised to talk with patients who have never read their personnel handbook (i.e. guidelines). This should have been your first task after accepting the job. Read all sections that pertain to disability, ADA, sick leave, etc, so that you know how the employer operates. If they don’t give you a handbook on your first day, request one and take it home and READ IT! It should spell exactly what their policies are and, frankly, will help you see just how progressive they may or may not be. If they don’t have personnel policies for you to review, that suggests that this business doesn’t want to commit their rules to writing or, worse, may not intend to follow employment laws like the ADA.

Confidentiality is a must. Your employer should not reveal your medical information and/or request for accommodation to anyone in the workplace other than your supervisor, safety personnel and, if necessary, for workers comp. In other words, your health should not become a topic of office gossip.

Harassment is, unfortunately, one of the biggest barriers that patients face and this is where patients must be smart and strong. Document and save everything. Keep a detailed diary of any discussions related to your disability and IC, including dates, times and the names of everyone present or involved. If harassment is occurring, write down everything that is said to you as accurately as possible.  Save any emails that you receive that contain questionable statements. Of course, save all written communications too.

Filing Complaints

Internal Employer Grievance

If you feel that you have been the victim you have the right to file a complaint however I will start this discussion by saying  that I regret spending more than five years filing a complaint and eventual lawsuit against my former employer even though I won. In hindsight, I realized that I was fighting a job and an employer that I had lost all respect for. Worse, it added so much stress to my life that it probably made my health worse and certainly slowed my recovery. So, the first question to consider is “Do you like this job and the people you worked for?” If yes, then your first line of complaint is through the companies internal grievance process. In fact, this is an essential step to further state or federal complaints. They’ll want to make sure that you pursued all internal dispute resolution processes before you try the bigger complaints.

Your personnel policies should tell how to file the grievance and what to expect. In my case, because I was filing a grievance against the Executive Director of the non-profit, I filed my grievance with their Board of Directors. I claimed that the Executive Director was discriminating against disabled employees in a downsizing action.  My employer ignored my grievance and that paved the way for my second step, a state complaint.

State Complaint – Fair Employment & Housing

While federal ADA law can be broad and difficult to enforce, state employment laws can actually be easier to pursue. For example, the State of California disability laws applied to employers with 5 or more employees rather than 15. FEH departments have personnel who take questions every day and can be a great sounding board if you’re not sure if you’ve been a victim of discrimination. In my case, the FEH department conducted an investigation over a period of a year and found discrimination but they were unsuccessful in negotiating my return to work. They then gave me a letter which I could use to file a lawsuit.

Federal EEOC

Before filing my state complaint, I also called the EEOC several times and talked with their representatives. They too felt that I had a solid but not excellent case because I didn’t have a lot of other employees. They tend to prefer more class action cases where multiple employees can provide evidence of discrimination. They suggested that the State would give me a better chance BUT they had awesome educational materials on their website that really helped me understand what the law was.

National Labor Relations Board

Many employers live in fear of the National Labor Relations Board. This board takes, very seriously, complaints filed by employees and have a tremendous amount of power. Their job is to protect the rights of most private-sector employees to join together, with or without a union, to improve their wages and working conditions. If you believe your rights have been violated, or that an employer or a union has engaged in unlawful conduct, you may file a charge through one of their  regional offices. They, too, have very good phone advocacy and might be worth a call as you do your research.

Civil Lawsuit

Filing a lawsuit should be your last option. Stressful, costly and exhausting, it should only be pursued if you’ve spoken with several attorneys (and maybe a judge or too) about the merits of your case. I made the mistake of only talking with one attorney who said it was “a million dollar case.” Oh, so wrong. What I later learned was that he was filing bankruptcy and was using my attorneys fees to pay the bills. And, in the bankruptcy court, he gave my case a value of “zero.” Yeah, zero. Thankfully, with the help of a judge and with tremendous stress, I managed to fire his a#$# and hire another attorney who helped settle the case. Thank God.


I’m thankful that the ADA was passed 25 years ago and that disabled patients have rights that they didn’t have a generation ago. That said, we still have a long way to go. If you feel that you’ve been discriminated against, you do have rights and you can pursue a complaint if you so choose. I think it’s important to ask yourself “Do I want this job back? Do I respect these employers? Are they worth the gift of my time.”

In hindsight, I really do wish that I had just accepted the termination with a smile, asked for a written reference and then walked away. After all, if they truly would treat people this way (I thought I had cancer actually and was waiting for exploratory surgery when I was terminated), would you want to give them another minute of your life? No! Start looking for your next opportunity. If money is tight though, be patient and don’t leave until you have another job lined up!

By |2017-01-18T12:02:49+00:00July 21st, 2015|Disability, Interstitial Cystitis Network Blog, Jill's Journal|Comments Off on Does your IC make it difficult to work? You have rights under the ADA!

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.