Saturday, May 28, 2011

Recent Email Concern: When and What to Tell Your Employer

We recently received an email expressing the following concerns:

When is it appropriate to tell an employer (new or established) that you have narcolepsy? What if you can't make it through the day without dozing off at least once? Who should you tell about your narcolepsy, and what should you tell them?

This is a question that many people with narcolepsy struggle with, there are no right or wrong answers. 

For some of us, the need to make sure that our employer is aware of our situation is an overriding compulsion that demands that we provide explanations for our behavior (in 2004, when I was initially diagnosed with Narcolepsy, I got a note from my doctor to have added to my file in the hopes of preventing any repercussions if someone found me "sleeping" at my desk. Since then, that note has been lost in my file, I have been "called to task" for dozing off during meetings, etc. and in self defense have felt the need to request a new, updated letter to be added to my file at work. I have a new director who has challenged me to provide proof of my disability). 

Others fear that providing information of this nature is like offering an employer an "easy out" option if they find any thing unsatisfactory in our job situation.

There is anecdotal evidence on both sides of the discussion that would make either response reasonable.

Let us know what you think by posting your opinions here.

Sunday, May 22, 2011

May Meeting Recap

First of all, I am so sorry for posting this so late! We had a great meeting this month--here's what happened:

We had a guest speaker, Ann Austin, with us via Skype. Ann is from the Sleep Disorders Research Advisory Board (SDRAB) at National Institutes of Health (NIH). She gave us an overview of what SDRAB does at the NIH and told us that they are currently focused on five major areas:

  • understanding the biology of sleep, studying genomes and phenotypes and using that information to personalize medicine
  • studying sleep receptors all over the body
  • discovering the long term effects of sleep disorders on the overall health of patients
  • disseminating their findings and information effectively
  • training future researchers in sleep medicine

The group also discussed having another community picnic this year. We decided on Saturday, September 10 for the date in lieu of our regular September meeting. Once we determine the location for the picnic, we'll post the information here and add it to the MNSG calendar.

Thank you very much to the Narcolepsy Network for providing funds for support group picnics again this year!

We had a few technical glitches this month with the call-in line and with Skype, but we were up and running by about 11am. Apologies to all those who tried to call in while we were setting up and missed us! We hope to see you at our next meeting, Saturday, June 4.

Tuesday, May 3, 2011

Upcoming Meeting: Saturday, May 7

Our next meeting is this coming Saturday, May 7.

We will have a guest speaker, Ann Austin, who will discuss the Sleep Disorders Research Advisory Board and the National Institutes of Health (NIH). Ms. Austin will talk with us during the first half of the meeting and the second half will be for open discussion.

Hope to see or hear from you all this Saturday!