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A MyMSTeam Member asked a question 💭
San Francisco Bay Area, CA

I came across a favorite book again this week, and it made me think about reasons it’s good and reasons it’s bad to hide conditions like having MS. In Amy Tan’s novel, The Kitchen God’s Wife, a daughter keeps her 7-year MS diagnosis from her mother, who has kept many secrets of her own. Got me wondering about disclosure and nondisclosure of medical conditions from co-workers, from friends & acquaintances, from relatives, from insurance companies, etc. From my personal experience, sometimes there… read more

August 2, 2018
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Answer Summary

Members shared a wide range of experiences around whether to keep an MS diagnosis private, with some choosing openness from the start and... Read more

Members shared a wide range of experiences around whether to keep an MS diagnosis private, with some choosing openness from the start and others carefully guarding the information to protect their careers and relationships. Several members described workplace challenges, including being pressured out of jobs, facing privacy violations, or worrying that disclosure would limit their opportunities, while others found that being upfront helped them access needed accommodations. A recurring theme was that the decision to share is deeply personal, shaped by trust, timing, and the nature of each relationship, with many members agreeing there is no shame in choosing what feels right for yourself.

A MyMSTeam Member

After the first 5 years I had few symptoms for the next 30 years. Other than close work friends I kept it a secret at work. I worried that it would somehow negatively impact my career options. They didn't need to know. I figured if it became apparent that I had a medical issue I would tell them. I never had to.

August 4, 2018
A MyMSTeam Member

I shout it from the hilltop......

There is nothing to be afraid or ashamed of......it is no longer my problem .....it is up to other people how they deal with it!

August 3, 2018 (edited)
A MyMSTeam Member

At the school I worked at my principal announced to my colleagues that I was diagnosed with MS. Everyone I worked with bent over backwards to help me except the principal (who basically violated hippa laws). I was pressured by the principal to leave my job, I eventually consulted with a lawyer who advised me to continue to work as long as I could and to insist on a schedule that gave me time to rest when I needed it. I reminded the principal of the laws for disabled persons. I worked for 5 years after my diagnosis then I applied for disability. My insurance from work covered me for 5 more years until I went on Social security. I considered my leaving teaching my early retirement.

August 2, 2018
A MyMSTeam Member

Well family, umm , I've never kept mine to myself, I've always spoke about, and always said I've never had it. When they first diagnosed me with. Lol. So yes I talk about it, not for sympathy.⭐🌠

August 6, 2018
A MyMSTeam Member

I have a big mouth and can't keep secrets..lol..probably since i am a nurse all my co workers know plus last year i was hospitalized at the hospital i work at after having complications from a lumbar puncture. My HR department knows because i was on a leave of abscence for 30 days..
Luckily i don't have any motor issues that yet mine is all sensory &pain

August 2, 2018

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