Why I decided to “come out" to my coworkers about having MS

I was told not to divulge my “disabled status” at work from the office that works (confidentially) with people who have disabilities at the university that employs me. During a year of being lost in my professional life, I constantly went back and forth on this topic.  At the first position, it came out that I had MS because I had an awful relapse that caused me to be out of work for four months. It really wasn't their business as to why I was out sick, but being a young lady and bed-ridden raised a lot of eyebrows, so I told them. I didn't want to be a character in a string of gossip and speculation.

I was with that division for nearly three years before I had enough of inconsistent and unreliable leadership.  I wanted to stay at the university though, so I looked for another position elsewhere.  I should have stayed at my original post. I didn’t really trust anyone at my second position to divulge my daily battles.  It was a stressful situation and I already had communication issues with my boss.  If she couldn't understand or respond to the most simple requests, how could she understand this? We did not see eye to eye.  Luckily I was in a classification that I would not be terminated, just reassigned.

The third position was only temporary while I found my niche, so there was no need to talk about it. there. Although in the short time I was there, I thought I could some day expose my secret to my coworkers.

Now, here I am in a wonderful position with so many awesome opportunities.  I enjoy my coworkers and for once actually admire and respect the leadership. This division has their act together and is remarkably organized.  I have never in my life worked for an organization like this.  I love it.  Not only do I love my day to day activities, but the Vice Provost reached out to me to be a part of a special initiative.  This would never have happened in the places I worked before.  I feel valued and appreciated.

Cluttered desk.  Cluttered mind?

Would I mess that up if I told them I had a disability?  Would they think less of me? Would they not trust me to be able to do my job?

Out of all the places I’ve worked on this campus, I had the most trust in my coworkers, my supervisor and the leadership of this division. I felt comfortable disclosing my disability with my supervisor (and my supervisor to be be…due to office restructuring) at my annual review.

I wasn’t sure how I would bring it up, but the topic of MRI’s came up during a casual conversation before the review. My current supervisor talked about how she was slightly claustrophobic and my future supervisor asked if she had ever had an MRI as her husband was a MRI technician. I took it as a sign to start talking about my own experiences with MRI’s.

They were very supportive and thankful that I let them know.

I was so relieved and am even happier and more secure in my work life.  I have confidence again and am looking forward to tackling some tasks.

It really comes down to my decision about who I let know about my disease. The main reason why I wanted to disclose my situation is because I don’t think it’s fair that I get to “hide” my illness while others who are in wheelchairs or use canes do not have that choice.  Also, I’m an advocate for people with MS.  How can I truly fight for us and support others if I am keeping my MS a secret?

This was my decision.  Just like each person with MS is different, so is each person's decision to talk about their experiences.

Working Gal

One of my biggest fears is not being able to work.  Actually, I think losing my independence is my biggest fear. Working makes me feel independent.  I think I’m seeing a theme here.  I don’t need a man.  I am my own woman.  Rosie the Riveter type stuff...

I can do it!

When I was at the MS support group I was a bit scared after hearing how many people had quit their jobs because the various symptoms made it difficult for them.  I didn’t ask the specifics like what exactly caused them to quit or how they are living with no income.  These are answers I don’t want because I plan to keep on working.  My mother worked with MS.  She loved her job and even if she lived until she was 80, she’d be working.  She always said she’d be an awesome Walmart Greeter.  

Like my mother, I can’t just succomb to the disease and let it take over what I love.  Sure my job drives me crazy some days, but what job doesn’t do that?  I like having a purpose.  I like contributing to society.  I like that steady paycheck too.

To continue having a steady paycheck I am open with my colleagues.  I know my limitations and have swallowed some pride to tell them where I need help.  My memory sucks.  It has been trial and error to figure out ways to remember the tasks set before me.  I’ve had to tell people to list  EXACTLy what they need in a linear fashion.  Things were a bit rocky when I didn’t know what I wanted or needed, but open discussions have made things easier.  We have a system, and are now a great team.  

Human Resources is a very helpful resource.  When I was out due to my relapse they called and checked on me frequently to help me with anything I needed to keep my job.  Then, when I went back to work, they made sure I had everything I needed to acclimate back into the job. 

Distractions have started to cause problems for me.  Loud noises and various people parading around my desk make it difficult to get things done.  I know a lot of people that have similar issues, but with my cognitive issues, I need to be able to focus.  I actually went into work today because no one would be there.  With the lack of noises and distractions, I have gotten so much done and was able to set up my work week.  I plan on doing this again since the next few months are going to be really hectic.  

If I continue to find ways to work where I can focus I can overcome cognitive issues.  If I am sure to not overdo it, I won’t get tired as easily.  Just being aware of my limitations and finding ways to deal with them and overcome them, I feel that I will be a working girl for a very long time. 

 

I have problems with this...can you guess what?