When Tanina Agosto woke up on a summer morning in 2007, she had no idea her world was about to change.
She got out of the shower in her apartment in Brooklyn, New York, and felt her left side go numb; she couldn’t control her left arm or leg or feel the left side of her face. Agosto, now 47, remembers thinking she had a stroke.
It wasn’t a stroke. Agosto was diagnosed with multiple sclerosis (MS). The disease left her feeling lethargic, fatigued, and struggling to walk. Along with the physical and emotional challenges of living with a chronic disease, Agosto grappled with a huge shift in her social life.
Before her diagnosis, Agosto had a packed social calendar filled with martial arts classes, after-work drinks, late nights at clubs and lounges, and weekends filled with movies and friends.
“I was going out several times during the week, and when the weekend came, there was more socializing,” she recalls. “I was doing all the things you do in your late 20s in New York.”
MS left Agosto too tired to go out. Social invitations became less frequent as friends misunderstood her limitations.
“There was no socializing; there was no hanging out with friends anymore,” she says.
How MS Can Affect Your Social Life
MS can take a toll on relationships and social activities. The disease can cause problems with fatigue, balance, coordination, concentration, muscle stiffness, and body movement. Favorite activities that you never thought twice about may now seem overwhelming, leading to cancelled plans and confused friends.
It can be hard for others to understand what it’s like to live with a chronic illness like MS, says John W. Lindsey, MD, director of the Division of Multiple Sclerosis and Neuroimmunology at The University of Texas Health Science Center at Houston.
“You have to deal with a chronic disease and a somewhat unpredictable disease,” Lindsey says.
In the early days of her illness, Agosto watched as her world grew smaller. A few close friends checked in, but most of her social life disappeared. Some people seemed to think she lied about her symptoms, making them sound worse than they were. Even when friends urged her to come out, Agosto rarely had the energy.
“I was really kind of to myself for the most part during that time,” she says. “When you go through this process, you realize who your friends are, [and] I definitely did lose some friends along the journey.”
Her family's well-meaning but extreme concern worsened her isolation. Their worries about her health led to constant reminders that she needed to rest. Every time she tried to do something, there was a chorus of, “You need to sit down.” The constant warnings made her feel suffocated.
A Facebook Ad Changed Everything
One day, Agosto saw a Facebook ad for a ferry from Fort Lauderdale to the Bahamas. On a whim, she booked a trip. Less than a year after her diagnosis, Agosto traveled to the Caribbean island solo, walking on the beach and soaking up the sun. It was more than a getaway; it was a declaration of her independence.
“I did this big thing, I got this diagnosis, and I went somewhere alone — and I didn’t die,” she says. “I felt so free.”
That trip marked a turning point. Instead of shrinking her social world, MS pushed her to expand it in new directions. She started asking herself, “What else can I do?” It’s a question that continues to guide her life and her social calendar.
Finding New Ways to Connect
After that, Agosto began saying yes to experiences she wouldn’t have considered before MS. She tried roller skating, axe throwing, and bowling. Her openness led to new friendships, many through the adaptive sports community, where she was surrounded by people who refused to let illnesses and disabilities define them.
“You have to spend your time doing things that mean something to you,” Lindsey says.
He believes that spending time with others who have similar experiences can be helpful. He says that spending time with others who have similar experiences can be helpful, as someone who understands the disease process can offer valuable guidance.
For Agosto, it has certainly been an eye-opening experience.
Managing Energy for Social Activities
Even though she was diagnosed almost two decades ago, Agosto admits MS requires constant calculation. She has learned that being social isn’t as simple as saying yes; it’s about managing energy.
“There are days when I wake up and I’m super lethargic and I just don’t have the energy to be social,” she says.
Friends now understand when she needs to cancel plans. But when there is an important event on her calendar, Agosto plans weeks in advance. She uses “the spoon theory,” in which each activity uses up energy measured in “spoons” that you can ration to preserve energy for big events.
“That means the week leading up to an event like a family barbecue, I’m not going out anywhere after work,” she says. “I have nothing else social planned because I know I’m going to be running around the park, playing with kids. I need to conserve my energy for that.”
It took time to learn. Agosto estimates it took a year after her MS diagnosis to figure out how to manage her social life. At first, she pushed too hard — working, hanging out, doing chores — only to crash for days afterward. Now, she knows to build in recovery time.
Today, Agosto’s social life looks very different from her pre-MS days. Gone are the spontaneous late nights in clubs. In their place are planned activities and quality time with people who understand her limits.
She still has to weigh every invitation against her energy. There are cancellations, quiet nights, and days when numbness makes walking impossible. But there are also barbecues, dates, and adventures she once wouldn’t have dared to try.
“I just have all these different experiences that I never — prediagnosis — would have thought to try,” she says.
MS has redefined — not erased — her social world.
“I like to go out and do things,” Agosto says. “I don’t want to just sit down in a movie theater. I want to be active.”
