When I think of my community, I first think of where I live, my friends and neighbors who will show up for me, and those I’m compelled to show up for. In times of crisis, a surge of community help is noticeable. A call to action is made, and people rise to the occasion.
“I am so grateful for this community and the wonderful people here. It has been life-changing for me to have so much support, be able to help others, and to find great resources. Bravo, MSAA!”
Summer looks a little different when you are living with multiple sclerosis. The heat, the fatigue, the unpredictability of symptoms – it all factors into how I plan, what I commit to, and how I protect my energy while still enjoying the season. Over the years I have learned that a meaningful summer does not require a big budget or an ambitious itinerary. It requires intention. And a little planning ahead never hurts either.
“The reward of a thing well done is having done it.” ~Ralph Waldo Emerson
Sure, Ralph. Sometimes, having something done well is enough. It’s a relief to have it off the to-do list. It’s not nagging at me, and I’m not stressing about doing it anymore. But sometimes I still need acknowledgment for my hard work. A quiet nod or smile to myself in recognition: a star or smiley face drawn in my journal.
A lot of living with multiple sclerosis for me is invisible, and the effort it takes to prevent or delay physical decline is huge.
Living with MS brings many unexpected changes. While much focus is placed on physical symptoms, one of the biggest impacts of MS can be on our social circles. Relationships, marriages, and friendships might undergo a massive shift after a diagnosis, though everyone’s journey looks different.
People from the MS community have shared their raw, realistic, and hopeful experiences regarding how multiple sclerosis has reshaped their connections with others. Their stories show both the potential hardships and the relationship wins of navigating these shifts.
Living with multiple sclerosis has taught me a lot, especially when it comes to protecting my mental and emotional well-being.
When I was first diagnosed, I didn’t have it all together. There were moments of confusion, frustration, and a lot of questions about what my life would look like moving forward. While I still don’t have all the answers, I’ve learned that small intentional habits can make a big difference in how I show up each day.
Question: What causes the pain and tight pressure around the body known as an “MS hug,” how is it treated, and can it be avoided?
Answer: The causes of the MS hug aren’t entirely clear, but we believe it is caused by an inflammation or injury to the nerves of the central nervous system (CNS), consisting of the brain, spinal cord, and optic nerves. This inflammation interrupts nerve impulses and sends mixed signals to the body and the muscles. When experiencing these symptoms for the first time, it is often uncomfortable and disturbing. The term “hug” may sound inappropriate as a hug normally refers to a warm and affectionate feeling, unlike an “MS hug” that can be quite uncomfortable.
For the average person, catching a cold is a minor inconvenience—a few days of tissues and cough syrup before bouncing back to work. But for those of us living with multiple sclerosis (MS), the narrative is often drastically different. We know that a “simple” bug can feel like a seismic event. As one community member vividly shared, “mundane ailments can knock us down for the count.” What might be a fleeting annoyance for our friends and family can hit us with the force of a freight train, leaving us drained and vulnerable.
As we approach the season of giving, the Multiple Sclerosis Association of America (MSAA) would like to bring special attention to the many wonderful community members that we serve. With our mission of Improving Lives Today, MSAA genuinely strives to advocate for and prioritize the well-being of all individuals who have been affected by multiple sclerosis. Over the years, we have collaborated with so many inspiring people, and we are honored to be able to highlight their stories.
In the spirit of the holiday season, we would like to share the heartfelt story of mother and son, Monica and Brian, who both live with multiple sclerosis.
“I’ve learned that in any situation, if you are not advocating for yourself, you’re not going to get anything. My name is Monica Proctor Wilson, and I was diagnosed with multiple sclerosis on my 40th birthday after spending several years seeking answers to my symptoms. For four or five years, doctors kept saying that it was fatigue, and that I was overworked and needed to take a break. I believed it was multiple sclerosis, and I started asking about it. People would ask me, ‘Why would you want MS?’ I did not want MS. I just wanted to know what was going on with me,” Monica shared.
As I write this on December 1, 2025, my mind turns to the year behind me. The first thought that rises is the people we lost. My mother passed away extremely unexpectedly on June 9. Her absence has sent a wave of grief through me, my wife, my four siblings, and her ten grandchildren. Yet as painful as it has been, I am grateful for what grew out of that difficult season. My brothers and sisters are now closer than we have ever been, and that closeness has carried us forward.