There have been many times since my diagnosis of relapsing-remitting MS in 2015 that I have felt shame for being different. I feel shame when someone calls out my gimp or when I have to admit to a coworker that I can’t assist them with something if I’m flaring.
I have been shamed by others; those who do not understand what it’s like to be chronically ill, and who extend minimal compassion or understanding.
I nurtured a persona and the belief that I was strong. I failed to show vulnerability and worked to very high standards and performed in the highest of pressure. I met professional goals and managed life fairly well. I was The Strong One… until I wasn’t.
About a year ago, I was diagnosed with multiple sclerosis. While I knew that something was wrong, I never imagined it could be anything as life altering as MS. In one conversation with a neurologist, I felt that my life was over. Oddly enough, people counted on me to do what I’ve always done. My loved ones waited patiently for me to activate my best skills to fight this challenge, as I have fought all other challenges. But I had nothing. No desire, no will, no interest in going to battle with multiple sclerosis. I was so sick, physically and mentally, I could not think rationally about MS. I felt alone and scared about my future...
No question about it – these are challenging times for everybody. But it’s particularly tough for those of us that have other health concerns, like MS. What, exactly, are we supposed to do? Stay home and opt out of all human contact? Isn’t that also unhealthy?
The good news is that there are a surprising number of online resources available to get us through this crisis, and many of them are from the National Multiple Sclerosis Society itself. Below are some of my favorites:..
I try not to look back. However, this summer marks the 30th anniversary of the Americans with Disabilities (ADA) Act. So, I let myself peruse my memories a bit.
I didn't know I had MS until I had had it for decades. I was 40 when I was diagnosed with RRMS in 2014, and I have used a wheelchair ever since.
Sometimes life throws you unexpected curveballs that unknowingly turn out to be priceless life lessons. A silver lining is how I think of my MS and what I often tell people when they ask about my diagnosis.
Back in 2016, I woke up and the left side of my face was numb. I did not feel like Jenny. I felt like a completely different person with a numb face and a throbbing head. I trusted my gut and went to the emergency room after a few days of sitting on these symptoms. After a quick workup, they dismissed me quickly and said I needed to rest, take a day off work, drink plenty of fluids, and that these symptoms would subside quickly. I did as I was told, but still did not feel like me...
Coming to terms with having a chronic, incurable illness like MS doesn’t happen immediately. It takes some time to reorient yourself to a different reality – to be able to accept that things have changed. Acceptance of a new normal, of peacefully coexisting with the new limits an illness has placed upon your life, is not instantaneous.
For me, the road to the uneasy peace I’ve tried to make with my course of relapsing-remitting MS has not traveled in a straight line. Despite all the reading and researching I’ve done, despite how much my awareness of the disease has been raised, I still have my blind spots. There are times when I am in denial about what living with MS means...
Is it possible to look presentable with MS?
Being young and having MS comes with a lot of challenges. One of which is the ability to be trendy/well-presented whilst battling weak limbs, pain or hands that don’t always work...
I pulled into one of the several, empty handicapped parking spaces after seeing that none of the unmarked spaces were available. This particular lot was, by my estimation, the best place to park on the university campus for me to preserve my dearth of energy.
I would be teaching two classes located on the opposite ends of the campus. I’d have a 10-minute break in between – a break that would not long enough for me to get from one building to the other in time. Once inside the second building, I would have to strip off layers of clothing due to the intense heat and humidity inside the room, which trigger my MS-related heat sensitivity. Following the three-plus hours of instruction, I would walk back across campus to my car and gird myself for a more than one-hour commute home in gridlock city traffic...
I was diagnosed with multiple sclerosis in October 2010. I was 27 and had a daughter who just started kindergarten. I was working full-time as a nurse in a busy local practice. I had just started dating the man who would later become my husband. As time went on after diagnosis, my family and I moved forward, and transparently fought our battle, sharing with everyone we came in contact with what life with multiple sclerosis was like for us.
Eight years after diagnosis, I started realizing that the majority of public policy discussed was having a direct impact on my life. I started to focus in on how vital talking with our legislators is and what I wanted my legislators to know specifically about my life with MS...
Drag and drop is a function that makes our computing lives easier. But what if that function is part of your everyday physical life? In other words, your foot drags and drops, and you fall if you’re not quick enough to catch yourself. This condition is called “foot drop,” and it’s a common symptom of MS that compromises mobility.
It triggers fear of falling and has potential to cause serious injury. Fortunately, there are devices that can help mitigate foot drop and keep a person upright even during exercises like running. One of these is the ankle-foot orthosis (AFO). And for those living with MS, like the resilient people we talked to below, the AFO helped them continue their passion for exercise...
Muscle and body aches
Shooting head pains
Loss of taste and smell
These are some of the symptoms of COVID-19...