work and saying you have MS

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work and saying you have MS

Postby whyRwehere » Sun Oct 09, 2005 8:08 am

Rather new to posting on this site, but have read it for a while. My question for everyone is: How many of you have told your employer about your illness? Did you find this to be beneficial or a mistake? Were they understanding, or not? Would you advise someone to say or not?
Thanks ahead of time for any answers...
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Postby bromley » Sun Oct 09, 2005 10:17 am


I'm from the UK so the job issue may be different elsewhere. My first attack started with losing feeling in my right arm and my right hand went odd - couldn't write properly. As I was in the same room as eight others everyone knew that I had a problem and knew that I was going to a neurologist after being referred by my GP. On the day of the dx my boss called to ask how I got on and I told him MS. I was off work for a week on steroids and all my colleagues signed a card and sent it to me and the day I returned someone had baked some cakes and someone else had got a computer mouse with a large ball on the side - better control until my hand got better. Word spread and other workers would come up and say things like 'my mother-in law has had MS for 20 years and is doing fine'. A week later everyone had forgotten about it.

In the UK you cannot be kicked out of your current job for having a medical condition / being disabled. However, I saw another neurologist some time later and he said that I would probably have difficulty changing jobs because a potential employer would have access to your medical records.

It's a difficult call and very much depends on your relationship with your close colleagues and the culture of the organisation.

Hope this helps

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Postby JFH » Sun Oct 09, 2005 11:57 am


I have this pinned if front of my desk in the office:[quote]7 Habits for Regaining Power in the Workplace with Chronic Illness

Focus on What You Can Control.
You may not be able to control the course of your illness. You can control the direction you take and the choices you make regarding that illness in the workplace. View your chronic illness as a challenge to meet, not an obstacle in the way.

Ignore the Naysayers.
Many people will tell you that work is stressful and that rest is best for people with chronic illness. Ignore them. Unpleasant work or too much work can be bad for anyone’s health but stress or lack of rest does not cause chronic illness. Yes, you have more challenges now than you did before, but throwing in the towel is not the only option. Shape your work environment to meet your needs and you can’t harm yourself.

Come Out of the Closet.
Chronic illness is nothing to be ashamed of. Keeping it a secret depletes your precious energy and gets in your way. Maintain your right to privacy and be judicious with your information, but don’t take on the burden of pretending that you don’t have a chronic illness. Be as public as you need to be and as private as you want to be.

Don’t Just Survive—Thrive.
It’s easy to feel that survival is enough. And most people who love you won’t expect more from you than that. But chronic illness or not, you weren’t born for mediocrity. Raising the bar doesn’t mean doing more than you can; it means aiming high and seeking what you need to thrive. Reach beyond relief; go for the satisfaction.

Control the Message.
Other people on the job will be looking to you to set the tone, and you can influence the way they respond to your illness. Design and control your message: What and how much do you want to say? Who do you want or need to say it to? When and where do you want to talk? Get out in front of the conversation.

Don’t Let Your Illness Define Who You Are.
Some people might try to paint you as a martyr; others may consider you less worthy of recognition or promotion. Neither extreme works to your advantage; each gets in your way. The message you want to convey is that your chronic illness is simply one of several cards in your deck; just like everybody else. Having a chronic illness is neither a source of shame nor a source of pride.

Look for the Silver Lining.
Although you may not believe it now, workplace success in the face of illness is transforming. Many of us have found new strength and confidence—qualities we never knew we had—as a result of our illnesses. We have used this newfound power to face other life challenges. It need not all be about the bad news.

Drawing on 25 years of work experience, living with chronic illness, Rosalind Joffe coaches individuals to thrive in the workplace. ©2003 Rosalind Joffe.
(originally published in Scleroderma Voice, 2003 #4)[/

Helps me but I have a very understanding employer !
I am what I am
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Postby agnOstos » Mon Oct 10, 2005 1:41 pm

I have a great employer. They expressed their concern but after some education realized I could still be a very productive member of the team here. In fact, 1-1/2 yrs after dx, I was promoted to IT administrator. I think it all has to do with your employer. Do or will they behave morally and ethically? Is there any indication of which way they might swing? I had no reservations about disclosing my condition with my employer whatsoever, however if I suspected they would not have acted that way I would have kept my mouth shut.
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