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

Telling friends, family, and co-workers about an MS diagnosis can be challenging

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by Ed Tobias |

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The other night I dreamed I was standing in a military formation when my leg began to twitch with an MS spasm. I couldn’t stay in line. The top sergeant yelled while the other soldiers laughed.

Suddenly, the scene shifted to a balance beam, where I desperately tried to stay upright, but knew I couldn’t. So I jumped off. More laughing.

In the dream, I realized it was time to make another kind of leap by revealing that I have multiple sclerosis (MS).

In reality, I disclosed my MS long ago. It’s not easy to do that, whether it’s to your boss, co-workers, friends, or family. No matter how or when you do it, there will be repercussions, and there’s no one-size-fits-all approach.

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Disclosing at home

Telling family and friends was actually pretty easy for me. My wife, a physical therapist, diagnosed me before the doctors did. She understood MS, which was a good thing, but she also understood there was no cure. I think I let her tell the other relatives and friends, taking the weight off my shoulders.

My son was only a year old when I was diagnosed, so he grew up alongside it. As he grew older and I began to walk with a cane, some of his friends asked him why I needed it. I said to tell them I had a bad leg. I didn’t want to bother him, or me, with trying to explain an illness that has no easy explanation.

My grandkids also grew up with my MS. In fact, my grandson learned to walk with me by holding my canes

Disclosing at work

I wasted no time at work. I told my manger and the people I supervised right away, keeping it simple. “I have multiple sclerosis and don’t know where it will eventually lead,” I told them. “I may have to be out once in a while, but I don’t expect it will affect my work.” I don’t think it did, but several weeks later, I was fired. I wasn’t told why.

I know other people with MS who lost their jobs after disclosing their illness. I know still others whose employer gave them the leeway and accommodations they needed after they disclosed. Disclosing at work is a very difficult decision.

I can tell you that when I was a boss, I didn’t like surprises. Knowing about a potential problem right away gave me time to figure out a plan to handle it. Experts at West Virginia University’s Job Accommodation Network (JAN) say there’s no legal need to disclose anything before you’re hired, but they caution that it’s better to disclose your disability before any disability-related job performance issues surface. JAN provides a wealth of detailed information on its website.

This whole job equation may change, of course, if your job is outside the U.S. If that’s your situation, I’d suggest contacting the MS society in your country for specific guidance.

An Army life wasn’t in my cards

I don’t know where my Army dream came from. There was still a military draft when I turned 18, and a lottery chose who would be called to serve. My number was 307 out of 365, so I was never called. With an MS diagnosis coming several years later, it’s probably a good thing that my military service was limited to dreams.

You’re invited to visit my personal blog at www.themswire.com.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Abbey avatar

Abbey

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.

Reply
Ed Tobias avatar

Ed Tobias

Hi Abbey,

That's the best response from a boss I've ever heard. I need to find a way to use that response someday, though I doubt I could match the way he said it. I'm glad your work experience was good and sorry that you finally had to stop working there.

Ed

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

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)

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Ed Tobias avatar

Ed Tobias

Thanks for the comments, Ben. It's really nice when the boss understands. Interestingly, in a later job I was the boss when an employee came in to my office and disclosed an MS diagnosis. She was quite surprised when I responded "I understand and don't worry," and then told her why.

Ed

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Kenan Boate avatar

Kenan Boate

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

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Ed Tobias avatar

Ed Tobias

Hi Kenan,

It was about three months later but no, it's not. But there was no way to prove my MS was the reason for my firing. As I wrote, I'll never know whether that was the actual reason.

Ed

Reply
Sandra L Cuaron avatar

Sandra L Cuaron

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.

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Tom Anderson avatar

Tom Anderson

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.

Reply
Ed Tobias avatar

Ed Tobias

Hi Tom,

Thanks for taking the time to provide all that information. It's unfortunate that was your experience. It's also unfortunate that there are many others with similar experiences, though my impression is this is more prevalent in smaller companies. I was very fortunate in being able to spend most of my career working for a company where my skills outweighed my disability and where I found support right up to the CEO level when, at one point, I had a target on my back.

All of what you wrote is certainly food for thought for all of us.

Ed

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