Finding Silver Linings Through My Work as a Health Advocate Has Helped Me Live with MS for 38 Years

Told to Nicole Audrey Spector

A few weeks after graduating from college, I was in a serious car accident. I had a concussion and an open wound that required 16 stitches. I don’t remember the accident, but I do remember a really strange feeling that haunted me for a while: my feet were numb.

I went to see our GP, who checked me and told me my feet were numb because the shoes I was wearing were too tight. It seems silly to me now, but then I believed him. I didn’t want to think that something was wrong with my health. What does he do? Especially when they’re 21 and in the middle of creating the brilliant life they’ve always dreamed of.

Five years later: I’m walking to the bus station after work and notice that my feet feel strange: completely numb, and I can also feel the ground. I look down and see that I’m not wearing shoes, nothing at all. My high heels slipped and I didn’t even notice. And that was not all. She was weak and tired beyond belief. Something was very wrong.

I went to see a general neurologist for a complete exam. This was 1986, and back then they didn’t use MRIs, just spinal taps and CT scans. I had both tests done to get a diagnosis.

After the test results came in, the doctorhe called me to his officeto tell me that I would have to quit my job and move back in with my parents. In fact, something was very wrong. But what? The doctor did not give me a definitive diagnosis.

But he did tell my parents, whom he knew. My mom gave me the news that she had multiple sclerosis (MS). I had never heard of this disease, but I immediately understood from my mother’s ghost-white face that it was devastating. I held back my tears. I had to be strong for my mom.

I was always taught to be brave and listen to what the professionals said. So I followed the doctor’s advice without even understanding what was happening to me. I left the job I loved and moved back in with my parents. It was painful, yes, but I kept a positive outlook. I saw this mysterious diagnosis as a challenge. I would learn everything about this disease that was robbing me of my hard-earned independence.

The local library had mostly outdated publications, so I went to a bookstore and bought every title they had on MS. I wrote letters to national MS organizations requesting information and immediately received generous responses, including personal phone calls.

At the recommendation of my neurologist, I went to a local MS care center. That ended up being the smartest thing I ever did in my life.

When I first visited, a nurse practitioner at the center told me, “Never let MS become the sum total of who you are.” These words lit a light inside me. They inspired me. I knew I had to dedicate myself to MS advocacy work.

But I had to get through the grueling treatment for my MS flare. This was the Middle Ages in terms of what was known about the disease. The only thing the doctors offered me was to load me up on steroids, which helped with the overwhelming fatigue but had other horrible side effects. I grew in size and was always hungry. My doctors banned exercise, believing that physical activity could trigger another flare. It is now well known that this is not true, but again, the Middle Ages. I followed the doctor’s orders and became a miserable couch potato.

My family and my then-boyfriend (now husband of 35 years) helped me get through that terrible time. They showed me how important it is to have someone by your side. His love led me to want to help others. No one should have to go through MS alone.

Cathy and her cane, 2024

I immersed myself in ways to be helpful. I ran an MS support group that allowed me to connect doctors and other MS experts with patients. We discussed big ideas that weren’t discussed much back then, like how complementary medicine, like acupuncture, can help and the importance of advocacy and inclusion.

Together, we pave a silver lining to living with a difficult illness.

My husband and I decided to try to have a successful pregnancy. After consulting with experts (who were few at the time), I became pregnant and had a great pregnancy and birth experience. Now we have a wonderful son.

A lot has changed since then. The MS landscape looks different. There is awareness about chronic diseases and there are unique medications designed to control flare-ups. I have followed each new development with passion and curiosity, and am as dedicated to advocacy work as ever. Thanks to social media, I am global and connect with MS experts and patients around the world. It’s amazing.

I don’t want to sugarcoat it. MS is difficult and although I now have more effective treatment, there are still challenges. For example, I still can’t feel my feet. I have some cognitive dysfunction, some bladder dysfunction, and other comorbidities. But I also wake up every morning to a new day. With my husband, I am exploring new territories within my possibilities. And with my cane, I’m touching new ground.

MS happens, and yes, it does not go away as a cure has not yet been found. In the meantime, we are here for each other during our darkest and brightest days. The MS community is a place you can trust. So lean in, because MS will never be the sum total of who we are. We can do hard things together.

Resources
MS Support Group Finder

This educational resource was created with the support of Novartis.

Do you have any real women, real stories of your own that you want to share? let us know.

Our Real Women, Real Stories are authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

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