Life with MS

I've always been a goal-oriented person. I knew very early on in my life what I wanted to do as a career, and planned the steps needed in order to achieve the goal of completing a Ph.D. by the age of 30. To say I worked hard to achieve these goals is an understatement. 
 
But I did achieve them. I reached the goal of earning a Ph.D. by 30, and was diagnosed with MS just four short years later. You can imagine my absolute frustration and fear after being diagnosed with a disease that could easily rob me of the career I had spent my life working towards. Thankfully, I am still able to work full-time – with some accommodations. I am still as goal-oriented now as I was prior to the diagnosis.
 
I am fairly well-versed in the Americans with Disabilities Act and so when it came time to apply for these accommodations at the workplace, I was able to do so without hesitation. However, two things affected me for quite some time: The first is guilt. The second was assumptions being made by others.
 
I have accommodations to help with this disease, so if I am unable to lecture on campus, I am able to roll my face-to-face lecture course to an online format. It is an amazing accommodation to have when my legs decide to not to work very well. I can record my lecture at home, interact and engage with my students online through Skype, Adobe Connect, email, and so on.
 
Teaching online is often assumed to be easy, but let me tell you – it isn’t. But the show must go on! In this way, students are able to benefit from the lecture, and what I am afforded with this accommodation is the ability to work from home, and take the time to heal from either a relapse, or when fatigue strikes. It’s a win-win situation.
 
However, guilt comes in when I have to use these accommodations. Even though I am actively working (but doing so at home), I feel incredibly guilty. I am frustrated that I cannot do the level of work that I would like to be doing on a daily basis. I am irritated that other colleagues who are healthy are barely doing what is required to get by. The bottom line is I want to work and this darn disease keeps me from doing that.
 
And, then there is the other problem – the assumptions made from other colleagues are echoing loudly in my ears. When I initially received accommodations, I overheard a few people discussing the things we with MS hear quite frequently. “She doesn't look sick,” “She gets to work from home, must be nice,” and so on. I didn't bother addressing any of these assumptions. I expressed these frustrations to a good friend who is also a colleague, and we reframed this frustration to a joke of ‘how nice it must be for me to sit at home and eat bon-bons, just because my legs weren't working!’
 
It is sad to say, but it has taken me quite some time to come to grips with the fact that having this disease means I have to stop on occasion to care for myself during a relapse or flare. Fatigue is a fact of life, and something that is never well-timed in my schedule. I am still goal-oriented, I just have to reframe how I work toward my goals of my career.
 
If a flare, relapse, or fatigue tries to get me down? I remind myself how lucky am I that I have accommodations that allow me the time to heal, even if it means my work slows to a snail’s pace or stops completely! And the guilt for needing to slow down or stop, and the assumptions by some others?  Well, they have a place, and that place is out of my mind. I cannot control what others think, and shame on them for making negative comments that benefit nobody. When it comes down to it, I remember that I am entitled to these accommodations for a reason, and that using them helps me and the students who still benefit from the education I’m offering, even if I’m doing it from home.
Depending on your situation and symptoms, you may require accommodations in your home or workplace. As a member of the workforce, it is important to understand that it is your legal right to request and receive accommodations, so that you have the same opportunities as people who do not have a chronic illness.
 
Too often, the people who need and deserve these accommodations are either unaware they have the right to request them, or have no idea where to start or what to request.
 
Before you make any requests, you need to know exactly what accommodations you need. Accommodations can range from ramps, to hand railings, to special floor mats, and all the way to speech-to-text software. So, identify instances where your typical routine is disrupted by MS symptoms and start there.
 
This might mean special lighting or magnifiers for people with vision problems, fans or space heaters for those with temperature sensitivity, or even requesting a handicapped parking space if your workplace doesn’t have one.
 
Your symptoms are specific to you, and your accommodations will be as well. Just like with Dr. Haynes-Lawrence, some accommodations will only be needed occasionally, but others will need to be more permanent. The options can be overwhelming. An excellent resource is the Job Accommodation Network (JAN)
 
This website houses information about accommodations for a variety of different conditions. Their section on MS offers dozens of suggestions based on either specific limitations you may need to overcome, or work-related functions with which you may need assistance. JAN goes a step further, offering lists of items that can be used based on your selection. They even include tips for employers to consider, making JAN a “one stop shop” for accommodation information.