We love each other, but we hate multiple sclerosis

Day 29 of 31

This is Mike and Jenn Powell’s story, as a conversation:

Jenn and Mike Powell stand with their dog, Skye, in Laguna Beach in November 2023. (Photo by Vicki Shequin)

Jenn Powell: My husband, Mike, hates multiple sclerosis (MS). There was a time years ago when I would have tried to offer that hate some enlightenment, to try to realign his thoughts to be more positive and accepting. I would ask him to embrace the disease. But I can’t. I hate MS too.

Mike’s honesty permits me to be honest about my feelings about living with secondary progressive multiple sclerosis. After he witnessed my journey from diagnosis to progression, I wanted to better understand his point of view.

JP: You comforted me after we learned my diagnosis. What were you going through?

Michael Powell: That moment was bittersweet. I had watched you suffer for months with various symptoms and felt helpless. I was relieved to have a diagnosis, an answer. But hearing you had MS was hard to believe. I shelved my shock and emotions to take care of yours. You needed me. Little did I know what was in store for us.

JP: Did reading about the disease online or in print prepare you for the reality of MS?

Jenn and Mike Powell were married on Oct. 25, 1997, in Belvedere, California. (Courtesy of Jenn Powell)

MP: No. The words were mechanical and did nothing to prepare me for what MS looked like. It was a fast learning curve. The materials lacked any real-life experiences. It helps to see people explaining or showing what MS can do.

JP: Has MS affected our relationship?

MP: Yes. It changes everything. It has brought more frustration and conflict because we have different ways of dealing with it. I watch you fight for independence through falls and refuse to accept help. I know it would be good for you to use your cane. You refuse. You are irritable. You are stubborn about doing things yourself, even when you cannot. But I also have such admiration for your tireless fight. You wake up every day fighting this disease and what it has taken from you. You refuse to give up. I don’t know if I could do that. I watch you fall and cry and get right back up. I despise the disease, but I am so in awe of how you choose to live with it.

It is hard to know what will trigger your MS on any given day. You might be okay in 80-degree weather one day but have a spell the next. We are cautious with heat, fatigue, insomnia, and pain. I know you suffer even when you try to hide tears.

JP: What advice would you give a spouse who found out their significant other has MS?

MP: Be there for your loved one and stay strong. It’s important to put your own emotions aside at this time. Try to learn as much as you can about the disease. Remember, this disease changes daily, so try to adapt and be flexible. Most importantly, just love them. They are scared, and it’s OK that you are too.

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, and Pinterest for more stories like this, using the hashtag #MSSpotlight, or read the full series.