I’ve noticed during our Internet radio interviews, people want to know our thoughts and guidelines around the issue of disclosure. This is one of the most important questions for people living with a chronic illness who want to remain employed, and the most impossible to answer directly.
The choice to disclose your illness during the interview process has to be a personal decision. There is no way we could possibly tell you what is right or wrong as there are too many variables. You’re not required to voluntarily disclose. You are required to answer interview questions as honestly as possible. Your potential employer is allowed to ask you questions to find out if there is anything that would prevent you from performing the tasks of the job for which you are applying.
“Job Relevance is the Key Factor.” From an article on monster.com: …interview questions should be designed to determine a candidate’s capability to perform the essential functions defined for the job. An interviewer is required to couch their inquiries in job-relevant language, and not to make assumptions about a candidate’s ability or disability. If you want to read more about what an employer may or may not do, read the full article, How to Interview Candidates, Part 3: Legal Interview Questions and Hiring Guidelines.
What about you, the candidate? I’m fairly certain it’s not necessary nor wise to start out your interview by introducing your illness too: “Hello, I’m Joan Friedlander and I have Crohn’s Disease?” It may be absurd to suggest you would ever do that, but the guilt and worry might make you want to just get it out of the way.
In our book, Rosalind wrote out some good ideas and guidelines about disclosure during the interview process (page 117). I think there is a lot of merit to her suggestion that if you decide it’s important to disclose that you do what you can to wait until the job offer stage, and only, again, when you have reason to know that you’ll need accommodations of some sort. If you chose not to disclose during the interview, you’ll do better if you have some plans for how you’ll handle disclosure if you’re ability to do your job changes. You can get help with that in Women, Work and Autoimmune Disease.
I confess I never disclosed on an interview because I only looked for a new position when I was well, and nothing was preventing me from doing my job at that moment. In addition, I didn’t understand what I was actually living with for some time because I went in to remission for almost 3 years after my first round of symptoms subsided. By the time another flare up came around I had 2 more jobs under my belt.
Later, when I had a clearer understanding of my situation, it was still quite likely that I could be in remission for months at a time. How could I say, “I should be ok for 10-12 months, but then I’ll probably have to go out on disability for a bit?” Do you think this was the wrong choice?
Here I am again, 3-plus years in remission. If I were to decide to go back to work for a company, do I know that I would become ill again? I don’t. I’m smarter about my situation, and I believe I’d handle disclosure differently if I felt it was important for the job ahead of me. Of course, now that we have the Internet a quick search would take a potential employer to this blog. Drat! I’d better get back to my marketing.
Joan
I’ve already written about my job at Brentano’s books, and what happened when I became ill, both on our blog and in our book. I haven’t written about the dream. The bookstore I opened and managed was located in Sherman Oaks, California, just a very short distance from Hollywood. Most of my staff were aspiring to work in the film industry. I didn’t give a hoot about Hollywood. I was simply interested in writing. Back then (it was the early 1990’s) I only knew that I might like to write a book. I had no idea about what.
If anyone had told me that my first book would be based on my experience living and working with a chronic illness, I would not have believed it. I was a pretty darn healthy girl. If they also told me that I would be talking to groups of 20-50 people about marketing, time management and work-life balance issues, I wouldn’t have believed them either. Not this scardy cat. I most certainly would not have believed it 8 years ago when my Crohn’s symptoms were pretty constant, and the slightest bit of anxiety would send me rushing to the bathroom.
But, here I am, with a book, getting ready for my first book signing event, right back where it started, at a bookstore. Is this the silver lining in my story? Did I have to go through this to have my dream?! Apparently so.
It’s hard to find the silver lining when you can’t do your work without also feeling overwhelmed and exhausted, or you have used up your sick days and it’s only July, or it feels like you have to choose between taking care of yourself and having real fun. It’s a big giant suck.
I like the late Randy Pausch’s distinctions in The Last Lecture. Tigger or an Eeyore? Silver lining and dreams or the alternative? Which is better for your health?
Believe me when I tell you that I’m not a pollyanna. I can go into victim mode like everyone else. But, as my coach says, I’m so used to the life I have, I’ve forgotten how good it really is.
I close with another one from Randy’s Last Lecture, ‘We can’t change the cards we’re dealt, just how we play the hand.”
Joan
P.S. I’ll be back with a more strategically-oriented post in two weeks. I’ll write about the questions of disclosure during interviews, and all the variables that go into the decision, predictable, and otherwise.
Joan and I were interviewed by Dr. Terri Orbuch, the “Love Doctor” on Voice America Radio (look for Dr. Terri, 08.11.08) about Women, Work and Autoimmune Disease: Keep Working, Girlfriend!
Dr. Terri asked some really good questions, specifically:
- Why did we write this?
- How do you talk about difficult issues such as chronic illness at work?
- What kinds of challenges do people encounter at work?
- How do you build a support team?
It’s always tricky being interviewed “virtually” because it’s hard to know who is going to speak when. It’s also more difficult to try to guide the interviewer in the direction you want her to go - rather than where she might take you. But I think we did a pretty good job getting our points across.
As you can imagine, it’s tough to talk about such a thorny issue and try to come up with some “tips” that people will find useful - which is what talk radio and other interviewers are looking for. We try to do it justice…
This blog was designated Top 100 Women’s Health Blogs. We’re delighted.
Rosalind aka cicoach.com
I’d heard that you need to be ready when the media asks, and last week we had a chance to test that out. I woke up and opened email early Wednesday morning (thank goodness I did that) to find a last minute opportunity to fill in for a 30-minute interview with Gary Pozsik on Health, Wealth And Happiness on WGCV 620AM out of South Carolina. Rosalind and I are still figuring out how to get the recording to you, and we will let you know just as soon as we can.
This last Monday, we had another opportunity, except this was a pre-planned interview. Dr. Terri Orbuch, “The Love Doctor,” spent an hour with us. She was lovely, professional and very warm in her approach. You can listen live on VoiceAmerica at 8 am Pacific time on Monday, August 11th.
BOOK SIGNING IN ORANGE COUNTY, CALIFORNIA - MEET JOAN ON AUGUST 23RD
In our book, I included some personal stories about my journey, which is without a doubt intimately shared by my son. I became ill when having the time of my life working for Brentano’s bookstore as a training manager, and my son was 7. Now he’s 23 and working at a local Barnes and Noble. When he found out the date our book would be published he approached the Customer Relations Manager at his store to suggest bring me in for a book signing, without any prompting or request from me. Wow. So many, many reasons this is a Wow…last week I went into the store, and there the book was, in a stack with a poster announcing the event.
If you happen to live in the area, I hope you’ll come on by. I’ll lead a short discussion about this challenge we’re all dealing with, and, of course, sign copies of the book. Click here to download the flier with all details..
Joan
Last week I “met” a lovely woman ( I could practically hear her accent in her emails!) , Lindsey Middlemiss of FibroAction.org, a UK organization. She’d read Women Work and Autoimmmune Disease: Keep Working, Girlfriend! and wanted to interview me about it and my business.
When bloggers interview, they tend to write a set of questions that you answer. It’s really quite efficient. You can read that interview here, Getting to Know Rosalind Joffe.
One thing about publishing a book that I think many people don’t realize is that most of the time, the authors, not the publisher, are responsible for selling the book.
I knew that before before the first word was written. But thinking you know something and actually living through it can be quite different.
Now I realize that there are actually three stages to being a “successful” book author (in my world, that means that you sell more than 1,00 copies in the first year).
- You write and edit it.
- You publish it.
- You market it so it sells.
Joan and I are in phase 3 and it’s much more work than I’d envisioned. And, we’re not doing it completely on our own! The publisher does some marketing (although it’s pretty minimal) and I hired a publicist! That said, marketing this takes hours out of the week that I could/should be devoting directly to the cicoach.com business building which is how I earn my living (no, unfortunately, book sales don’t do that).
I’m not complaining. I have to admit I get a kick talking about this – to all these people whom I’ve never and will never meet!
Rosalind aka cicoach.com
Too tired to post an entry
It happens to all of us, doesn’t it? You’ve said you’d get something done and you realize that what’s going on with your body is creating mush in your brains, making it difficult to fulfill on an intention. You can perform where you absolutely have to, but try to push when you’re tired, and it’s practically painful.
It doesn’t happen often, but last night some low level grade of worry kept me from really getting to sleep. I think my body eventually won the battle with my mind at about 2:30 am.
This is my week to post and today was the day I’d planned to write my post. However, because of other projects and appointments on my schedule today, and my mush brain, I simply had nothing to write. I couldn’t find my inspiration nor did I have the capacity to do some research to uncover something current and relevant. That happens some times, right?
Thank goodness I have a partner here. I sent a short note to Rosalind and admitted my complete lack of thought about what I might write about today. She made a couple of suggestions, including what I’m writing about here (the other two ideas would have taken too much brain power).
How does any of this tie into our book, or the challenges of living with a chronic illness? Sometimes we get really, really tired! And, being the good soldiers we are, we may push and push and push, more committed to the external promise than honoring what’s going on with our bodies. If I’ve learned anything from those times when my body just wouldn’t support my lengthy to-do list, it’s been to stop pushing. And, to stop trying to be so compliant. (I didn’t send my newsletter out today either, though I meant to.)
In my coaching business I work with self-proclaimed perfectionists. I smile when they tell me this. I know the tendency well. That’s another thing my illness has taught me; to stop being quite so concerned about what others will think. It’s really hard to “look good” when prednisone gives you a moon face, or you forget your words, or you’re running to the bathroom several times a day!
Like I said in the subject line, too tired to post … at least much more than the truth of today.
Joan
Heading for the second print run
We were just told by our publisher that they’re going to print another run. The first run was 2500 copies so that’s a good number sold in just two months. I’m psyched about that. It feels like we’re rounding the bases — and reading to run them again.
Writing a book is a funny thing. It’s being read (hopefully) by people whom we don’t know and mostly, we have no idea how people are responding. Other than through reviews. (And, I’ve had several people call me after reading the book to work with me. That’s rewarding!) .
So please, post those reviews. We’ve posted some of online reviews on our own web page
“If ever two things were once considered mutually exclusive, they were career and chronic illness. Add to that being a woman and the whole thing sounded like a joke. Well, we’ve come a long way, Baby.” (read more)
And then there are some on the Amazon.com book sales page as well.
“A little book with lots of useful advice; recommended.” (read more)
Even if you don’t want to write a formal review, we’d want to hear what you found useful - and not.
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FYI:
Any of you who want to write and be published: Leslie, a blogger (GettingCloserToMyself.com), has a call for submissions for a collection of essays she’s putting together. By women about their experiences with chronic illness.
And Christine Miserandino Donato, at ButYouDontLookSick.com is raising money for her family’s annual Lupus Walk. You can go to this page to read more and donate to thisvaluable cause. It’s a great thing to support even if you don’t live with Lupus yourself.
Rosalind
In one of the chapters I wrote for our book, Building Your Support Team, I told a story of the time I “fired” a gastroenterologist because he took a directive approach with me regarding a medicine he prescribed that I had strong concerns about. I also wrote about how my next gastro doctor prescribed the same medical regimen as the first, but because he addressed my concerns and explained the current thinking, I was comfortable enough to follow the advice.
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DISCLAIMER: When you read the specifics of what I’m about to tell you, know that I’m not making recommendations about your treatment. I hope and trust that you and your medical team have the most up-to-date information to make the best possible decisions for your situation.
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I’ve mentioned in past posts that my symptoms have been in remission for some time (3 years now). As a result, my doctor has gradually reduced the dosage for Imuran (an immune system suppressant most often used for kidney transplant patients that has been helpful in dealing with rheumatoid arthritis and Crohn’s Disease symptoms), and my Remicade treatments from once every 2 months to once every 3 months. Hooray!
Last week my doctor suggested that I discontinue taking Imuran. Why? There are several factors that went into his recommendation.
1. in the last year there’s been an increase in the incidence of lymphoma, suggesting that long-term use of Imuran carries some additional risk factors not previously known. What are the exact numbers? Not huge in the bigger picture, but enough to cause concern. Up from 4% to 6% in one year.
2. One of his patients just developed lymphoma at age 25, and he’s concerned. It’s a little more personal to him.
3. I was taking a low dose of Imuran and I’m symptom free. This gave him some freedom to make this recommendation. If I’d been taking a larger dosage, and/or was struggling with symptoms, he would have hesitated to suggest we try eliminating the drug altogether. So, it’s a weighted recommendation as all such decisions should be.
4. There’s new evidence that when Remicade works (it doesn’t for everyone) it may be sufficient on its own once symptoms go into remission. The gastroenterology doctors are still sorting this one out.
In many cases, improved quality of life and the clinical benefit immunosuppressive therapy provides still outweigh potential risks. 4 years ago, when my doctor was concerned about a possible need to remove of a portion of my colon, a hard-core medical response would have outweighed these risks. I’m sure that if my symptoms come back, we’ll revisit this decision.
I did a little Internet research and found some variance in the findings. I suspect, as one article suggested, that like everything else having to do with the body, there a variety of contributing factors to the increased incidence of lymphoma.
Rosalind and I believe that it’s important that the people on your team - medical and otherwise - communicate and disseminate information with respect. Perhaps you can see why I like this guy. He’s fully aware that when it comes to autoimmune diseases, the regimens for care are still experimental. He always keeps me up-to-date and continues to take a consultative approach. Even if he thought I should continue with Imuran, he would have let me know what he’d learned. I could ask for nothing more.
Joan
P.S. I don’t always like reading about the techy medical stuff, especially if it scares me. Risk factors are just that. They’re never absolute.