National Invisible Chronic Illness Awareness Week

Don't Be Invisible:
Workplace Success With Invisible Chronic Illness

Rosalind Joffe
Founder and President of CIcoach.com

Rosalind is passionate about giving people the tools they need to thrive in their work while living with chronic illness.

In addition to over 30 years of personal experience living with auto immune chronic illnesses, including multiple sclerosis and ulcerative colitis, Rosalind has 30 years of experience working. She has held management positions in small businesses and Fortune 500 companies. Ten years ago, she founded her own, very successful executive coaching business. Over the past decade, Rosalind has coached several hundred people. When she launched cicoach.com in 2003, she focused her efforts on working with people living with chronic illness who want to stay successfully employed in the workplace.

A nationally recognized expert, Rosalind has published her own articles in dozens of Disease Organization and Health Journals. She has also been quoted in The Wall Street Journal and The Boston Globe and has been heard on National ABC Radio, Boston Business Radio and Heathtalk.com, to name a few.

Rosalind holds a B.S. in Communications and an M.Ed. from Boston University, is a certified mediator, a graduate of Corporate Coach University. You can get her free, monthly e-Newsletter, Out in Front.

Visit her websites:

www.cicoach.com: Thrive in the workplace with c (chronic) i (illness) feature the resources and services a person needs to be successful at work - while living with a chronic illness.
www.keepworkinggirlfriend.com: women, work and chronic illness is an online community for women with chronic illness who want to work

Don't Be Invisible:
Workplace Success With Invisible Chronic Illness

Host_Mary_Shep: Welcome to the National Invisible Chronic Illness Awareness Week seminar. My name is Mary (a.k.a. "Shep" to many of you), and I'll be your host for this hour. We will open in prayer; then our guest will present the topic, after which there will be a question and answer period.

Rosalind is passionate about giving people the tools they need to thrive in their work while living with chronic illness.

In addition to over 30 years of personal experience living with auto immune chronic illnesses, including multiple sclerosis and ulcerative colitis, Rosalind has 30 years of experience working. She has held management positions in small businesses and Fortune 500 companies. Ten years ago, she founded her own, very successful executive coaching business. Over the past decade, Rosalind has coached several hundred people. When she launched cicoach.com in 2003, she focused her efforts on working with people living with chronic illness who want to stay successfully employed in the workplace.

A nationally recognized expert, Rosalind has published her own articles in dozens of Disease Organization and Health Journals. She has also been quoted in The Wall Street Journal and The Boston Globe and has been heard on National ABC Radio, Boston Business Radio and Heathtalk.com, to name a few.

Her Topic today is: Don't BE Invisible: Workplace Success with INVISIBLE Chronic Illness. Now, It is my pleasure to introduce Rosalind Joffe! Rosalind, may the Lord bless you as you share with us today!

Rosalind_Joffe: Hi all. Boy, technology -- we love it and we hate it. Glad to be here, though. And so glad you could be here with me.

I've lived with invisible and chronic illnesses for over 30 years. In the beginning, the multiple sclerosis wasn't so bad - I had flares that would subside and I'd feel almost normal again. Do you know what I mean? I can see you shaking your heads.

With surgery to remove the colon and new meds for the MS, my health gradually improved - and today I look and feel younger than I have in 30 years.

Through all this, I've found that working is the one thing that can get me out of bed and keep me going, even on my worst days. I've also learned that it's one of the most difficult things to succeed in. I saw that there are so few resources out there to give people the tools they need to be successful in the workplace. That's why I started my business, c (for chronic) i (for illness) -- cicoach.com.

In the amount of time we have, we can cover what I call the fundamentals of this challenging "game which is Living with Chronic Illness. It's a game many of us play alone -- but, in fact, it's best when you can make it a team sport. We all need all the help you can get. If I don't get to your question or don't answer it fully, feel free to email me at Rosalind@cicoach.com. I'll do the best I can to get back to you in a timely fashion

I'm not sure if I'm going too fast or slow -- and I've lost some of the "special effects" -- like bolding -- but I hope you can get my feelings of emphasis as I share my thoughts.

That's why today, we're going to focus on:

? Recognizing your choices and making a choice that reflects your intentions

? Why not to disclose - the CONS

? Why to disclose - the PROS

? The message you want to create - for disclosure and on-going communication

The Big Message I want you to leave with is that living with invisible illness means that other people are unaware of your experience unless you talk about it. This can, if you let it, lead to becoming under-employed (do you know what that means?) and/or isolated from others. Think on it, has this happened to you?

Let me share a story. My client, Linda, wanted a more flexible work schedule. Linda (not her real name), lives with chronic fatigue syndrome and had asked her boss to work workday with one virtual day a week. Other people in her department have this arrangement. Now, Linda's boss doesn't know that she has CFDS. So we talked about the pros and cons of this for her.

I call it the "scarlet letter" CI - it can lead you to feel as if you've been branded -- and you never make a move again without it there. You can feel like you've lost your privacy (e.g., "Are you feeling badly today, Sally? You seem really down.") If all that's true, why would anyone disclose? That's easy. If disabling symptoms get in the way of delivering your top performance, you're either going to lose your job or get a demotion if you don't disclose.

In Linda's case, talking about it:

? Allows her to seek what she needs to get your job done properly.

? Prevents others from making incorrect assumptions that are even more harmful to her reputation, such as she lacks motivation or is incapable.

? It can decrease her isolation from others

ASK yourself , what do you think Linda should do? Well, Linda asked for the flexible scheduling and her boss said, "Frankly, I could make the adjustment but I don't really believe there's a good reason. You look fine, and I have a hard time believing that you're sick. Are you upset about anything in your personal life?"

How horrible, right? It's easy to think he's a miserable person.

BUT,when Linda and I spoke about what happened in her meeting, she realized that she'd made some critical mistakes in how she presented the information. She was so filled with anxiety that she forget to think about crafting her message. You see, Linda (we all) have to craft these as we would any message that is important. Consider these points:

1. Your words and behavior set the tone. If you are embarrassed or ashamed, the other person will pick up on these feelings and respond accordingly. Most people are more than willing to trust that you are as confident as you say you are.
2. You can decide what you want to communicate. Keep the message simple and focus primarily on how this affects you, rather than on how you feel. Make it clear that you aren't saying this to dump your problems on another but because you want to be upfront about how you are taking care of the situation.
3. You have the right to decide who needs to know this. If you want this to be open information, make it clear. But, if you want to control who knows about your CI, then make sure that the person you are telling understands that this is private and you will tell people as you think it necessary.

Does anything about this not make sense to you?

When she went back and spoke with her boss again, Linda got the flexible
scheduling she needed. And she's feeling more confident about getting her work done!

We know that it doesn't always turn out this way - but you can bet that it's a more likely outcome than not saying anything.

A FUNDAMENTAL element of success here is in your interpersonal, what we often call communications, skills. These are skills that you can develop - either by studying it or using someone else to help you, such as a coach. I think, that like in any "game", it's best to find someone who knows all the aspects of the game - living with unpredictable chronic illness, being in a challenging job and how to coach people to develop the skills they need.

I'm ready for your questions -- so fire away!

Lynnette: I'm unable to drive any longer, so have been seeking a job I could work from home for a long time. I have excellent office skills, but all I seem to be able to find are scams. Where can you find "real" jobs working from home, such as transcription or things like that?

Rosalind_Joffe: Lynette - this is a great question because it comes up so often. I'm not sure what you mean about scams, though. I've had clients look for these kinds of jobs through Monster.com or Craig's list. I also think that using your own "network" of people you know can be very useful.

Carol: Usually the "work From Home Jobs" do ask for money. Would love to find one that is really "free"

Rosalind_Joffe: Oh, you mean the internet "scam" appeals -- work from home and make millions? No, I don't mean those. But there are jobs, real jobs, that you can do virtually. I know, for instance, that I use a virtual assistant. She doesn't have a chronic illness but everything she does is from her home.

patty123: I find, even when I disclose in a selfless tactful way, people just don't believe me because they can't see it. How do you get them to just have faith and trust what you say is true? (I had support for visible illnesses, but not invisible ones). What do you suggest?

Rosalind_Joffe: Boy, Patty, I know that can be tough. So, my first question is WHO are you explaining this to? Are these people who know that you're not someone who would make something up or use something as an excuse? If people already know you, stick to how this affects you. You can't do more than that. My second question is: HOW do you know they don't "believe" you? What are you looking for?

Angie: How did "Linda" manage to get her boss to see that she really had an invisible illness? And is it ever necessary to show medical evidence?

Rosalind_Joffe: What a great question, Angie. In Linda's case, she didn't need medical evidence because she and her boss had "history" and he knew that she wouldn't make this up. But I've certainly seen plenty of situations where a supervisor asks for some documentation. And, that's tough. Especially with illnesses that doctors don't have objective evidence for - so stick to the way it's affecting you -- and make sure your doctor can describe that. It's called functionality.

Connie: What if you work part time? Do you have the same "rights" as a full time worker when it comes to asking for help due to your health issues?

Rosalind_Joffe: Boy, another great question. "Rights" -- that's a big sticky mess. It really all depends on your employer -- and your "contract" as a part time worker. If you're permanent, part time, usually the "rights" are the same. But then we have to look at what "rights" are you referring to? An employer doesn't HAVE to give accommodations (my opinion as I interpret the ADA).

Carol: Once a boss knows you are ill, how do you prevent them from trying to subtly work at getting rid of you?

Rosalind_Joffe: Carol -- this is a toughie. What I believe is that the only thing you can control is your own behavior. The best way to prevent someone from trying to get rid of you is to make sure you can do this job that you've been hired to do. If you can't, no matter how nice a person is, they're likely going to want you leave, at some point. We're opening pandora's box with this question.

PCMoore: When you have to drop out so many times for being "sick" they just think you are blowing work off or even if they believe, they are getting fed up with so many days missed. What do you say when you've worn out., "I'm sick"?

Rosalind_Joffe: It's hard to give you a stock answer because I don't know the situation -- your work environment , your boss or you. I think you have to see this almost as your public relations mission - you have to sell, in the best sense of the word, yourself. Demonstrate when you are there that you are committed 100% - It's not easy - if you're sick frequently, there's a reason and it's hard to be upbeat when you're back. On the other hand, not going back to a job can be horribly demoralizing. When I coach people, I work with them to keep their intention to keep working - front and center.

standing: Are you allowed to refuse to undertake certain tasks in the work place as a result of your medical condition? If so, will your position become untenable? I live in the UK, therefore laws will be different.

Rosalind_Joffe: In the US, we have what's called the ADA -- American Disabilities ACT -- and that is some protection but particularly for chronic illness, it's all pretty sketchy and hard to prove. It all depends on whether you can DO your job in total -- and if there are some tasks that someone else can do, then I've found that most employers, when approached properly and with solid ideas, will try to make things works. Most employers would always prefer to keep a good employee than to try to hire someone new. That's why you want to make things work while you're still doing a good job-- and haven't hurt your reputation.

faith: I think if you go to school you can learn to do medical transcripts from home too.

Rosalind_Joffe: Yes, that's true, too. There are more and more jobs that can be done virtually. And some of them are jobs that might even be close to home. Law or medical offices that need secretarial work but you don't have to be on site.

Connie: If I may share a resource, please visit DOUA (http://www.doua.org) it is a free online service for people with any type of disability to help them work online. I am a proud mentor there.

Rosalind_Joffe: Yes - Connie - that's right. I almost forgot. By the way, I have lots of free resources like this on my website, www.cicoach.com. I offer a free newsletter as well. Also I have a blog, www.KeepWorkingGIrlfriend.com with resources and interesting posts.

Also - I've created 2 limited offers available to those who participate in this class -

** For the month of September only, you can sign up for a free call with me, on "Talking about your chronic illness at work" during the month of September.

** And, you'll get a 10% when you sign up for my coaching and a free copy of my book (coming out in early 2008).

cheryl: This just happened to me. I was sick all the time for two years - six surgeries and on med leave three times. The last time I knew I was still to sick to work I was the only one in my office, so every time I was out I would be that much more behind, I went to talk to them after my last med leave and they suggested I go ahead and put in for my SSI, so I did and was denied. I worked for local government for ten years and now I am fighting to get my SSI. I am pretty depressed and angry because its like I am too sick to work but not sick enough to get help. .I have an attorney now, but I feel incredibly helpless at this point

Rosalind_Joffe: Cheryl, that's a really tough place to be. I've been on a panel advising social security trying to make the standards more realistic. I've seen that people get even more depressed on social security - the benefits are so low and not doing anything can be really demoralizing.

Carol: I took Medical Billing and Claims at home through PCDI to home I really needed hospital experience for certain length of time? Also took Medical Transcription but did need to quit because of 'back surgery' but that works the same, do not know if any are different? Have not found any thing different, anyway?

Rosalind_Joffe: Carol, I think what you're saying is that you didn't have the right background to get the job you trained for. It can easily feel like you've wasted a lot of time and energy and the reality is that it isn't easy to find a job you can do. Keep at it, though. It's worth it.

Host_Mary_Shep: We are about out of time, so let's have Rosalind finish up this last question and then I will have a few closing announcements.

Rosalind_Joffe: Thanks to all of you for joining me here today. Please, visit my website and look at the free resources -- and sign up for the newsletter. AND, the BLOG - it's really fun - www.KeepWorkingGirlfriend.com. The book will be out early 2008. I wish you all success in all that you do. Rosalind

Host_Mary_Shep: Our hour is now over; thank you, Rosalind for sharing your wonderful presentation and for answering some very good questions.

Rosalind_Joffe: I can't remember if I said this or not :

I've created 2 limited offers available to those who participate in this class -