When MS Is a Family Affair

My adult daughter and I were diagnosed with MS within 10 months of each other. Here’s how that’s affected our relationship.

Though I was holding the hand of my grown daughter as she lay in the emergency room (ER) bed, what I saw was the face of the toddler she once was. As tears streamed down her cheeks, I understood the vulnerability and fear she must have felt.

She had just been diagnosed with multiple sclerosis (MS).

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Moving home

I understood her emotions because, just 10 months earlier, I had received my own MS diagnosis. My daughter and I would now share more than the exceptionally tight bond we’ve had since she was born.

When I was diagnosed, Jessica, more than anyone else in the family, was the one who educated herself about this disease to support me. Her daily call became multiple daily calls. As her understanding grew about what I was facing, so did her support. She shared articles, websites, and stories of friends she knew who had MS. She began insisting I move back to Denver, Colorado, from Asheville, North Carolina, where I had been living for the last 4 years. Denver offered a more robust healthcare system, with renowned MS programs and specialists. I had spent 30 years of my adult life in the Rocky Mountain region raising my family, so I also had a support system of old friends in Denver. But most importantly, Jessica was there. And I needed her and her unfailing support.

So, 6 months later, she and her boyfriend helped my son and daughter-in-law pack a U-Haul, and we made the 22-hour drive to Denver. She paid for the move. She made all the arrangements. She was on a mission! After a 1,449-mile trek, I was back home. A new chapter began. However, I did not see the twist my story would take.

Jessica’s journey

In February, a mere 2 months after getting back, Jessica began experiencing vertigo. As a leasing agent at a large apartment complex, her job requires a lot of walking. She immediately went to an otolaryngologist (an ear, nose, and throat specialist, sometimes called an ENT) who ordered an MRI. But before the scheduled date, her symptoms worsened, and she began experiencing cognitive and depth-perception issues. She also had difficulty walking, describing severe numbness in her legs. “Mom, I feel like my feet are cement bricks,” she said.

We became increasingly concerned as we waited for her scheduled MRI. Finally, as her symptoms became more debilitating, we went to the ER, where she had a CT scan and was told everything looked good. One week later, she found herself in an MRI, hoping for answers. However, because the order only specified looking at her inner ears, the imaging did not include any other areas. Again, she was told her ears did not show anything suspicious that could explain the things happening in her body.

Perhaps it was her education about MS. Maybe it was because she’s a spunky, self-aware young woman. But perhaps, most of all, knowing I had MS, she took herself back to the ER and politely demanded another MRI. She was quickly taken upstairs for an MRI with contrast, looking specifically for signs of MS.

I think I was expecting to wait a long time for answers. My journey to a diagnosis took years and was long, frustrating, and discouraging. But to my surprise, her doctor was back within an hour and a half.

“This is a clear and definitive case of multiple sclerosis,” he said. “I’m so sorry.”

I sobbed, clenching her hand even tighter.

Jessica was 1 month shy of her 30th birthday.

My journey

My daughter spent the next 5 days in the hospital, receiving steroid treatments, having other tests, meeting doctors, and learning even more about this disease we now share. Only she was forced to look at it now as a patient rather than just as a supportive child. During that time, her father and his wife flew in. Her boyfriend and many friends were a nonstop presence. She was in a cocoon of love.

As for me, I sat just outside that cocoon. I was both numb and in pain, alert and exhausted, devastated and resolute. Silent. Heartbroken. And, I confess, a bit jealous.

Jessica was diagnosed just 4 weeks after the start of her symptoms. Her treatments began immediately, and her care was exceptional. As a mother, I could not have asked for more and been more grateful. But as a fellow MSer, I was sad, confused, and angry. My own experience had been the exact opposite. I could not help but wonder how my life might have been different if I had had the same immediate care. Watching my brave and formidable daughter walk this path has proven to be educational and inspiring. It’s made me go deeper into my own self-awareness, showing me that I still have so much to learn — about MS, but mostly about myself.

Our journey

My first lesson began when she and I had quiet time to talk. I was overwhelmed to learn that her first thought after receiving the news that day in the ER was for me. She was worried about how this would affect me! She felt upset about telling people about her diagnosis because she knew it would affect everyone she loved. At that moment, I knew I wanted to become more of an advocate for this disease and that I needed to let go of the self-pity and shame I had been carrying. To let go of the “what-ifs.”

Lesson two was that isolating myself was not only self-serving and destructive but also unhealthy. Jessica was then and is now constantly surrounded by people who love her. I’ve pushed people away. It was time for me to heal and mend relationships that I allowed this disease to damage. It was time for me to take a hard look in the mirror and change my approach to match my daughter’s. To seek out ways that I could use this experience for good, make a difference, and grow as a person rather than wilt from fear, loneliness and, selfishness.

I initially looked at my move back to Denver as a way to surround myself with a more extensive support system and be close to Jessica. However, I believe I was brought back for something much bigger than myself. I was brought back to be a support to my girl.

One of the biggest gut punches was hearing about how her diagnosis almost ended her relationship with her boyfriend. Before that day in March, he only knew about MS from me. My MS is more advanced, and I am older, which is also at play in my life. His immediate thoughts and fears were that Jessica would follow in my footsteps or worse. His only other education about MS had been a Google search, and we all know how bad that can be when someone we love is sick. With only Google and my symptoms informing him, it’s no wonder he was shaken. They have since reconciled, and I see his support and understanding grow as he sees my daughter conquer this disease in her own ways.

Six months after her diagnosis, she completed her first 10K. He ran beside her, encouraging her every step of the way. They play softball and volleyball with friends, host game nights, and travel around the country regularly. They have a full life. I couldn’t be prouder.

Finding home

Jessica and I have always had an incredible connection. I didn’t think it could be closer, but I was wrong. We’ve reached a new level of understanding about one another. We remind each other that this disease affects everyone differently, and while we share MS, our journeys and experiences are as unique as we are. I pray daily that her path is different from mine. She prays that my path will get easier. And in many ways, it already has. I am more active now. I get out more and see friends. I am back in my own home, living and working independently.

But what I treasure most is when I have my baby girl to myself, when we can talk and laugh, when I can soak in the things I love about her without the glare of the world or the discussion of MS. When it’s just us. Like it always has been. Now, even stronger.

It’s at that moment I know I truly am home.