Dear Moms and Dads of a child with MS.

MS is difficult to grasp for those of us who have been diagnosed with the disease.  We get so caught up in the “what ifs” of our future with MS, that we sometimes don’t even know how to tell the people we love how it affects us on a daily basis.

Just continue to love us like you always have.  We won’t break if you hug us.  We’ll actually get stronger.
Sadly I didn’t have the problem of telling my mother about my MS.  I lost her to cancer five years before I was diagnosed.  Even if she was around, she would know exactly what I was going through since she herself was inflicted with MS.

I understand it would be difficult for a mother or father new to this phenomenon to try and understand what their baby is going through. Since the moment your child was born you have been trying to protect her from the hazards and harms of the world. It’s hard to deal with something you have no control over.  Now that I am a mother myself, I really understand the need to always keep my baby safe.

Do you know what I have to say to parents?  I’m doing awesome and your child will too.  It will take some time for her to come to terms with this new part of her life, but it’s only a small part.  It does not define her.  I am proof that a person can live a wonderful and full life while living with MS. I fell in love.  I had a child. I am pursing my MBA. I love my life.

There will be bad times.  It's not always going to be easy.  Her symptoms will make a lot of things difficult, but with relapse remitting MS, there will be a light at the end of a very dark tunnel.  Support and love your child with all you have during these relapses.

As long as I don’t ignore my symptoms and take care of myself, I will have less severe relapses. Do what you can to ensure that your son or daughter does the same and he or she will too be able to pursue all that s/he had planned to do before learning about MS.

Me and my Mommy..back when perms were cool.

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.