Dreams, Diagnoses, and Disclosures: When to Tell Others About MS

After months of hospital tests, it came down to my GP to give my MS diagnosis, due at my (managerial) place of work, I'd gone straight there, told the staff, and 'phoned my Boss.
He was a UK Northener, and they like to JOKE about most things: Example I'm 4'10" and H.O. had loads of fun with that. On hearing my news, Boss had said, "Ee, I've 'eard of thart", keen for info. I'd asked for more; unable to see his face, but I'm guessing it was straight when he'd told me, "It makes yer grow a foot...".
As well as making me laugh, that was the best possible response anyone could ever ask for.
I'd continued to work for them until my (MS) body had forced me to stop.

I was still in the military when I was diagnosed and since everyone in my little section knew there was something amiss and that I had just seen a neurologist, there was no way to keep the diagnosis to myself. I still vividly remember telling the Sergeant Major of the operations section. When I saw the look that came over his face, I was nervous that he was either about to start crying, or come around his desk and try to hug me and that I really wasn't sure what to do in either scenario. Thankfully the moment passed and once we talked about what the diagnosis might mean, everything worked out for the best.

(This isn't always the case with the military, or any job, for that matter)

You mentioned being fired 30 days later after disclosing your MS illness. Is this legal?

It was semester finales, and I went to drop off my finale report. When my left leg numb driving into the parking lot of the collage using my hand gears to stop the car. I started hitting my leg to see if the feeling of the leg would help. Sat for a bit and the feeling came back. I thought it was fatigue. I had a job, sons in Jr- high school sports football, basketball, music and Collage and my husband working nights. I thought I was over worked. I was doing well after two weeks I thought I was fine. Saturday morning my husband and I got up to go for a walk and I started to feel a little different and we get to the corner waiting for the light to cross and my leg started to stiffen, I could pick up my leg and I panic, and my husband asked me if I could walk for the next quarter mile. I said, yes. Then next day I couldn't walk. My husband takes me to ER and, after 2 1/2 months of physical therapy. That was 1999. I was diagnose and seen 4 Neurologist. 99.9 M.S. I am still able to walk with help of walker and wheelchair at times.

Hello Ed- This is a longer one, sorry. (Perhaps a bit of “venting”). Let me say first that I think this is an area of MS life that needs research and a good set of recommendations, especially for work. These two issues were big “ugly” for me. Hope for the best but plan for the worst is my recommendation for competitive work situations where your “not being there”, is an already preferred outcome for some, to begin with. I’ll get to that.

But 1st, in my family, I told my mom (one of three sisters). She didn’t want to accept it, and it gave her something new to occupy her concerns with. Her sister, my aunt, was very upset with me, and later when my mother passed (dementia related) , my aunt blamed my disclosure. (Like I was supposed to fake it or something.). Everybody else was fine and supportive, and then my cousin (via other sister) was diagnosed also. But this one aunt made things more uncomfortable than they needed to be. MS is plenty to worry about in and of itself.

As to work, I had just graduated with a PhD in psych and obtained a year’s experience for licensure and passed the national exam, and obtained my dream job as an organizational consultant. The firm was just re-grouping and hiring licensed psychologists. This was not favored by some of the other non-psych consultants. The re-grouping also involved new ownership by a large bank, BB&T. They were the sponsor of the local MS Society too (so much for that). They owned the consulting firm I worked at, Farr Associates, which also no longer exists. In all fairness, BB&T had nothing to do with it, but they put their name on my paycheck and they had deep pockets.

The ADA had recently been passed. In my case, unlike yours Ed, there was a clear differentiation in behavior and treatment towards myself and others. A clear record of intending to find, and make up if needed, unfavorable information, leading to an unanticipated and emotionally shocking dismissal. Imagine- you’re just getting started with loan debt, trying to form a work history record, living in a new place states away from where you were from, and trying to “hook up” with someone. I disclosed at a meeting with the CEO of our company that I had MS. He requested I tell everyone at the 25 employee firm. There were secret recordings of confidential meetings with coworkers. There were memos responding to requests for unfavorable info. And finally, the made up story involving sexual harassment with someone in another country and the firing. How you going to deal with that?

But I had formed good relationships with many at work who provided me with support when needed. A law suit was settled and while the proceeds were a cautious amount, it did lead to self independence eventually. But I had to give up my career and ambitions to get there, which wouldn’t have been necessary if not for Farr Associates.

Moral of the long story? In a competitive situation where some others may not want your presence anyway, be careful, and yes, be paranoid- they are probably out to get you! Figure out who your enemies are and guard against them. But make lots of friends too. Always be professional and ethical. Keep copies of all written records at home. Keep notes on events and date them.

All this because I had MS. Later I learned they did the same to a black fellow. It was a terrible experience.