Phyl Rubin is talking but not about furniture. Phyl and Bernie own a New England furniture store chain. No, Phyl is talking about a secret she’s kept for 40 years: living with multiple sclerosis.
40 years of silence? Why? She didn’t have to worry about losing her job or a demotion. Did she think it would hurt sales? She’s quoted saying she didn’t talk about it because she’s a “private” person. But she’s been in the “public eye” for decades. Why did illness have to be private?
I think there’s a problem with the fact that people don’t talk about their illness and work in the same breath, do you?
I know the fear that this will negatively affect how others perceive them. But as Phyl’s husband, Bernie, said, people were noticing that she wasn’t the same — and making incorrect assumptions about her. When illness becomes debilitating, it’s noticeable.
The reality is that the overwhelming majority of people with chronic illness do not disclose their illness at work. Which means that supervisors and co-workers are unprepared about what to do when it comes up.
I’m not talking about complaining to anyone who will listen that you’re sluggish or have some pain. But there’s the point when you’re having trouble doing the work and your performance is suffering. There are some who can’t understand what chronic illness – unpredictable, waxing and waning, and often invisible – means. You might get negative responses or a subtle (even not so subtle) put down.
You have to be strategic talking about illness when others are depending on your deliverables. It also takes confidence and clarity. You can get some tips in my blog post and more strategies in my booklet, Talking About It.
The fact is that more than 40% of American workers lives with at least one chronic illness. But talk with human resource professionals about this issue and they typically say it’s not a problem for them. Of course, not. No one talks to HR about this – at least not until they file for disability.
Many come to me when they’ve hit serious roadblocks after disclosing their disease at work. But when we dig deep, disclosure isn’t the root problem. Sometimes they can no longer do that job — or in that place. Sometimes they need to make adjustments. You can find assessments in the Working With Chronic Illness Workbook .
I don’ t have an answer for this but it’s clear that saying nothing until you have to leave work altogether isn’t it. It’s not easy to let people know how hard your day is when you look fine. Or more importantly, why you can’t meet that deadline or make that meeting. But unless you do, they’ll have no idea what your problem is or what might help you. And you have no chance for improving the situation – – until you leave on disability. What do you think? What have you done about this and how did it go?
Marie says
Most of us have built up a carefully constructed work persona and we work hard at protecting that persona by keeping a fairly strict line of demarcation between our personal and professional lives. A diagnosis of a chronic illness may force us into any uncomfortable position where we have to share information we wouldn’t normally. When I was diagnosed with breast cancer, I felt quite vulnearble sharing the news with colleagues, and found their pitying looks and changed attitude to me hard to handle initially.
Rosalind says
That makes so much sense, Marie. No one needs the pitying look. It sounds as if you did talk about it/ disclose. I’m wondering if the cancer and treatment impacted your work and if so, is that why you did so? And how did that go for you?
Lucy says
I was in hospital and my colleagues were all very concerned about me when I was first diagnosed. As a result, it just wasn’t an option NOT to tell them what was wrong with me (“thanks for the flowers, cards and 3 months off… by the way my health is my business” wouldn’t have worked).
It wasn’t a picnic, but I think it was for the best in the longer run. The people I work with seem to be used to my occasional dramas now. They seem to understand that if I am taking a little longer than usual with something (like planning my next overseas trip) because I am dealing with doctors or because I am having a flare, then the best thing to do is to give me a little space while I figure things out. My colleagues find it helpful to know why I am a bit slower than usual sometimes and on average I perform well at work, so everyone is happy.
I started feeling a lot better about my own health drama when I realised that, actually, no one is healthy all the time. My boss has had to cancel major international trips because of problems with his teeth, another colleague caught pneumonia and came to the office looking blue (he was sent home to bed and stayed there for a couple of weeks). People get pregnant, catch colds, come down with shingles, get food poisoning and have children who do all of the above. It is all just part of the fun of having a job and being human at the same time. I am not really so strange, I reckon.
Rosalind says
Lucy- you’re spot on recognizing that you’re really not so strange and others have “dramas”, too. That’s a huge insight and thanks for sharing!
Jason Reid says
This is such a difficult issue. I really do think that for the good of not only yourself but also others who have chronic illness that it’s important to at least make your boss or bosses aware of your illness, but also educate them as well.
I try to be realistic but still positive. If you can suggest ways in which you can still do your work while dealing with your illness, it shows your a team player and are willing to help them help you.
Unfortunately, as long as people continue hiding their illness, companies have no reason to implement policies that could help those working through illness.
Rosalind says
Thanks as always for your valuable insights into this, Jason!
Beth says
I tried hiding my illness and it backfired. Literally. Feeling a lot of shame for having Multiple Sclerosis and trying to act as if nothing was wrong made me come across to others as if I wasn’t listening to them, when I was really trying to concentrate on trying to walk without losing my balance. I came across as ignoring people because I couldn’t do two things at one time and because my job involved speaking before groups and my speech became affected, I came across as unprofessional, and unqualified to do my job in many other ways. I was accused of being rude when I was just trying to make it to the bathroom in time to avoid an “accident”. My boss thought I was nervous and unable to do my job when my real problem was the anxiety I lived with fearing someone would notice that something was “wrong” with me. These are only a few examples of how hiding my illness at worked hurt me. I went from having a reputation so good in my line of work that it led to being sought after and offered jobs before even being interviewed to being unemployed and people thinking I just became lazy.
But I felt caught between a rock and a hard place. Today I am unemployed and trying to get disability benefits. I worked with the disease for a long time and wanted to look “perfect”‘. But as the disease progressed, it became impossible and I know I put forth my best effort. Had I talked more about it, I think people today would be able to understand why I am not now working. A lot of people with MS are able to keep working but it is such a variable disease that every case is different, and it also depends on what kind of work you do and your specific symptoms.
I live in a very small town and when I see people I once worked with, some will not even speak to me because I went on short term disability and intended to go back to work. When I was unable to at the end of these few months, everyone thought I just quit out of the blue. Now I wished I had let more people know all along. It also kept me from building close relationships at work because I had such difficulty concentrating on my work that I could never stop and talk to co-workers.
While I thought the best thing to do was not to talk about it, I see now that letting other people know would have if nothing else gone a long way in protecting my reputation. I don’t know that it would have kept me from continuing to being able to work though.