Columns The MS Wire - A Column by Ed Tobias She Disclosed Her Illness and Got the Job She Disclosed Her Illness and Got the Job by Ed Tobias | June 17, 2022 Share this article: Share article via email Copy article link It’s a decision most of us with a chronic illness have to make sooner or later: When do we disclose our illness, and to whom, and how do we do it? Thirty-one-year-old Katie Coleman faced that decision not long ago. Coleman has stage 4 kidney cancer, and, in April, she was being interviewed for a software developer’s job she wanted. To tell or not to tell, that was the question. “The number of [people] advising me to not disclose my [diagnosis] is astounding,” Coleman posted on Twitter. People with multiple sclerosis (MS) know why that was the case. Although the Americans with Disabilities Act prohibits most employers from asking about a medical condition on an application or in an interview, many of us worry that a potential employer may be scared off by the thought that we may need a special accommodation or that we’ll take more than the usual number of sick days. The risk of unemployment for people with MS can be high. Recommended Reading February 22, 2017 Columns by Tamara Sellman How to survive an MRI if you are claustrophobic I chose to disclose — once I understand the concerns about disclosing. When I was diagnosed with MS many years ago, I managed about 50 people at work. I thought they should know why their boss had been in the hospital for about a week and why I might have to take more time off in the future, so I held a staff meeting and told everyone. Four months later, I was fired. Coincidence? Fortunately, I was hired for my next job by someone I’d worked for prior to my diagnosis. He knew my diagnosis and my work. Everyone should be that fortunate. What if you wait? One of my go-to places for disclosure information is the Job Accommodation Network (JAN) at West Virginia University. Its website recommends waiting to disclose your MS until you actually need an accommodation, such as a nearby parking spot or voice recognition software. If you do decide to disclose, the website recommends that you only provide the most basic information about your illness and the possibility that you might ask for some type of accommodation down the road. Former Multiple Sclerosis News Today columnist Tamara Sellman did not disclose her MS several years ago when she interviewed for a job, following her MS diagnosis. She did, however, disclose it after she was offered, and accepted, the position. At the suggestion of a JAN staffer, she disclosed it to her employer’s human resources department rather than to her supervisor. Katie Coleman’s situation was a little unique. She told Kaiser Health News (KHN) that she was called by a hiring recruiter who had seen Coleman’s tweets about her cancer diagnosis. In her interview with the company’s CEO, Coleman wasn’t asked about her illness, but she was upfront about it. “My [diagnosis] is my greatest strength, not a weakness,” she tweeted after she got the job. Would you be upfront about your MS? Most of Coleman’s Twitter followers say they would disclose their illness, posting comments on her feed such as: “Congratulations on your new job. No reason to keep your diagnosis a secret.” “Yes to this! This is how I feel.” “In the HR world they often say ‘bring your whole self to work.’ Hiding this part of you would cause you more problems than being truthful.” I agree with them. On the other hand, Coleman told KHN it might not be the right path for everyone. “My advice is to first do the research on the company that you want to work for and know that they will be supportive,” she said. How do you feel? Would you or wouldn’t you disclose? If so, when? Please share in the comments below. You’re also invited to visit my personal blog at www.themswire.com. Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags chronic illness, diagnosis, employment Comments Leanne Broughton I have not worked in 20 years but when I was diagnosed I changed jobs. I was a nurse on a busy post op general surgery unit. I knew I would not be able to keep up the physical 12 hour shifts. I transfered to a day unit working 5 - 6 hour shifts Monday to Friday. I did not reveal my MS, the general advice I was given. But then I told very few of the personnal people in my life. It was not noticable then. 2 years later I was having difficulty with my vision and went on a leave. I had to tell my boss and co-workers, one of the hardest things. I never went back to work. Over the years my disabilities are more obvious. Reply Ed Tobias Thanks for sharing, Leanne. No matter how we handle disclosure we're never sure how it will work out. Ed Reply Nancy Anne Starks There was a time that I tried disclosing it to my employer that I had, but this ended in disaster. This was about a year after my diagnosis when I had my first relapse. My employer at the time did not like the idea of an employee having a major condition like MS. They were ignorant of it and educating them was met with resistance. As a result, my manager hired another person to be my back-up for my job and then I trained this person on how to carry out my assigned duty for it was a vital function of the company. It turned out that to my dismay; I was let go soon thereafter. I also was not aware of my ADA rights; for I was only little over a year into my MS journey. Thereafter, I did not disclose my MS to any of my employers after that. I did not trust them to handle an employee with MS and be able to execute the ADA provision for I felt that they did not have knowledge of it even though they are supposed to by law. In the meanwhile, I attempted to compensate despite of my MS with anything I could do to perform my work as best that I can. It got to the point that what I did to compensate was not helping me anymore; so, I accepted the reality of this and applied for disability. Reply Ed Tobias Hi Nancy, I'm sorry to read all of this. Unfortunately, I think your story is typical of far too many people. It's very difficult to decide what to do and what works in one situation may not work in another. Thanks for sharing, Ed Reply Gary Pardue I disclosed my diagnosis and after 6 months they came in and fired me after 27 years of service. They are a self-insured company and I'm almost certain that they were not wanting to pay for the expensive mediations that I was going to have to start. They denied my opportunity to receive my LTD Insurance that I had paid for for 26 years. Basically, here's a small severance package, you can come back in a week and clean out your office....That was about it. I got myself an attorney and filed and American With Disability Lawsuit against them. We settled for more money and the LTD insurance that I paid for. I signed up for Social Security Disability and was approved for it as well. No, I'm not making the money that I was when I was working but I'm not starving either. Reply Ed Tobias Hi Gary, Thanks for sharing your story. It's awful that things like this happen but I'm glad that you pushed for yourself and were able to come away with something. Ed Reply Tom Anderson Hello Ed- “Hope for the best but plan for the worst” fits so many of our experiences. I believe this is an area needing special attention in MS- How to be prepared for an ADA lawsuit… For me, I had just become a licensed psychologist, with a background in organizational change and development, which was all a requirement for the job, my “dream job”. That’s a lot of work and preparation- PhD, dissertation and internships, national testing. So being set up to be fired was heart wrenching the whole way through. Luckily, I was suspicious of what was going on. I kept good records and made friendships with those who could later help. Being a psychologist entails empathy, so others could see what was going on and when the crap began hitting the fan I was shown things like written memos requesting unfavorable info about me. Lots of ugly stuff I could tell you… Funny through all of this, our consulting company had been acquired by a large bank in the southeast who was a sponsor of- you guessed it, the MS Society! That didn’t help at the time, but it was funny and I’m sure, looking back, it was one of the reasons for the downfall and restructuring of my consulting firm within the bank. (All the old bosses gone.) There is too much detail to talk about but I would advise anyone working with MS to start establishing useful relationships and constructing a library of evidence which hopefully they won’t need but will be glad they accumulated if the time ever comes. Remember, you can’t get back into your office so have copies of everything! I settled a lawsuit too which felt good, but I should have settled for more or taken it to court. Once that happens, future employment is hampered by your job history. So even though I tried to continue, I settled for disability payments and SSDI in a few more years. But you can still make money with property investments and stock trading (I prefer safe dividend investing), which is what I used my settlement money for. Again, this an area that needs special attention and awareness. 1) How to treat MS, 2) How to sue your company, 3)… Reply Ed Tobias Hi Tom, Thanks very much for this detailed information. I've found that excellent performance reviews are a very good thing to keep in your hip pocket. Getting to know some people in a company's HR department is also a good idea. Part of my career was spent as Manager of Business Continuity and Disaster Preparedness. I was preparing for the worst everyday. :-) Ed Reply Tom Anderson "I was preparing for the worst everyday". Gotta :-) Reply Ed Tobias Hi Tom, But...do more than hope for the best. Be proactive about trying to make that happen. :-) Ed Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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