It can seem like the world is divided by an invisible line: on one side, “healthy” people, and on the other, people with MS, and sometimes the gap feels too wide to cross. People with MS can experience isolation in a number of different ways, says Meghan L. Beier, PhD, a rehabilitation psychologist and assistant professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine in Baltimore. “This can be true even if an individual has a very supportive family or a good social support network,” says Dr. Beier. It can be common to feel as though others don’t really understand you, your disease, or how it impacts you, and that can feel very lonely, she says. The feeling of not being understood by others can contribute to a sense of vulnerability as you try to manage concerns both immediate and distant related to MS, such as your energy level, your disease progression, and the judgments of others. And that sense of vulnerability, in turn, can make isolating yourself seem like a safer option, even though it’s really not, says Caroline Craven, a writer and marketing consultant in her early fifties who lives outside of Pasadena, California. Craven was diagnosed with MS in 2001. “Even though fatigue and pain can make it hard, we need to get out there and be with other people,” says Craven.

MS: Unless You Have It, You Don’t Really Understand

A big part of connecting with other people is feeling understood, and when you have MS that can be a challenge, even at home with your closest family members, says Michael Wentink, a 42-year old writer with MS who lives in San Antonio, Texas, with his wife and two children. My wife and children are super supportive; they love me very much, but I know it’s hard for them to understand sometimes, says Wentink. “When they see me, they see a happy husband or father, and although that’s partly true, there’s a lot of pain and a disconnection that exist because of my disease,” he says. “I can write about it and talk about it, but the reality is, unless you have MS, you can’t fully understand what I’m experiencing,” he says. Paradoxically, it can be alienating when friends try to empathize, says Beier. “For example, if a person with MS feels tired, a friend might say, ‘Yes, I feel fatigued or tired sometimes, too,’” she says. Although that friend is trying to help, it can make the person with MS feel like that person just doesn’t fully “get it,” says Beier.

Retiring From Work Can Add to Isolation

When he was first diagnosed 11 years ago, Wentink wanted to stay “normal,” he says. “I thought I could be Superman and keep doing everything, including staying at my job, but it just got to be too much for my health,” he says. But he misses the interaction he had with other people in the workplace. A large majority of people with MS — close to 80 percent of — will leave the workforce within a few years of their diagnosis, says Beier. “When that happens, people can often lose their sense of purpose or identity,” she says. Compounding the problem, when a person needs to stop working for medical reasons, it often means they’re experiencing symptoms that limit their ability to get involved in anything that might fill the void created by leaving work, says Beier. Faced with that situation, it’s a good idea to talk to someone in your support network or a therapist about what you can continue to value in life and the ways you can still contribute, says Beier.

Socializing Can Be Exhausting When You Have MS

Everyone wears a “mask” out in the world, says Wentink, and that is definitely the case when you have MS. “I put on a good face when often inside I’m in pain or exhausted; all I really want to do is to curl up somewhere and feel better,” he says. Holidays can be particularly fraught. For Wentink, “My mind is full of questions: Am I going to be able to handle this? Do I have the energy? How much pain am I going to be in tomorrow because of this? Those are the thoughts going through my head rather than what the holiday is actually supposed to be about.” Craven agrees that holiday gatherings and obligations can take a toll. “Over Easter I pushed myself too far with work and social commitments, and I had a three-week relapse after that,” she says. “That was a doozy. I hadn’t set the right boundaries — but I have now, so hopefully that won’t happen again.” Sometimes it’s the weather that puts a crimp on social plans. During the hot summer months in Texas, for example, just trying to play outside with his children can be brutal for Wentlink. And for Craven, “It’s in the nineties where I live now. It might not seem horrible for someone else, but for someone with MS, it can be the difference between going out and not going out,” she says. Wentink says, “When I meet someone new in the neighborhood or at a party, I feel like I’m holding what I call the ‘MS grenade.’” When making small talk, the topic of what I do for a living will inevitably come up, he says. “Before, with my previous job, it may have bored them to hear about me working on financial product line at a bank, but it felt safe and ‘legitimate.’” Now, when Wentink tells new acquaintances that he’s a writer, he sometimes hesitates when they ask him for details. “When I tell them that I write about MS and what it’s like to live with disease, it’s like ‘wah-wah,’” he laughs. “Then I wonder, do they regret asking? I’ve never gotten truly negative reactions from people, but still, internally, I almost dread telling people because it makes it harder to connect; I don’t want to be seen as a downer," he says. People with MS can have the perception that if they talk about the illness, it’s going to be depressing, or people won’t know how to respond to it, says Beier. “In some cases, this may be true, but it shouldn’t stop you from sharing what you want to share,” she says. “There are also people who don’t want to share their diagnosis with others at all, so there can be angst about that,” she adds.

Depression is very common in people with MS, says Beier. “Close to 50 percent of people with MS will experience depression sometime in their life,” she says. Fatigue can go along with depression, and so when I hear people with MS telling me they don’t have the energy to engage in activities, I try to distinguish between fatigue that’s due to the neurologic condition and fatigue that’s due to depression, says Beier. If the lack of energy and desire to be active is coming from depression, not only does that need to be addressed medically as a separate condition, but I also encourage them to push through that feeling when they can, because it will usually make them feel better, says Beier. RELATED: MS, Depression, and Fatigue: Expert Examines How to Break the Vicious Cycle

What to Do: Seek Out People With MS for Support and Understanding 

It’s common for people, especially right after diagnosis, to be reluctant to reach out to others with MS or attend in-person events, says Beier. “In those situations, a person may see someone who is further progressed in their MS, which can lead to anxiety, fear, and wondering, ‘What does this mean for me and my MS?’ It can cause a lot of anxiety,” she says. Initially, Wentink resisted reaching out to other people with MS, but his wife kept encouraging him. “She thought I needed it, and she was right,” he says. “I think I initially refused because I thought if I made that effort, it was like admitting that I really had MS and everything that goes with that,” he says. At one point, Wentink’s treatment involved monthly infusions, and he relished the opportunity to be around other people who had MS. “Even if we weren’t always talking, you could just look at each other and nod and get it. It’s like an unspoken ‘You know what it’s like to go through this,’” he says. When individuals with MS do get together with each other, there’s a bonding that goes on that can be incredibly helpful, says Beier. Just talking with someone can go a long way too, she adds. The National Multiple Sclerosis society has a peer support program that can help match you with someone with MS who can help you navigate the challenges of the disease, says Beier. Support is provided over the phone, so there’s no need to travel to make the connection. “It gives me less anxiety if I know I have an exit plan,” says Craven. My closest friends know and understand that sometimes I just have to leave, she says. “I always have a plan B in case I start feeling tired.” Craven typically tries to drive separately or be ready to call a ride share or car service when she goes out. “Recently I was out to dinner with friends at a ‘Margarita Monday,’ and the margarita really hit me. I was way too tired, and I probably shouldn’t have had it,” she says. “We were in the middle of a meeting, but I had to call a car to take me home before it was over,” says Craven. “They understood. I was just so tired that I couldn’t stay there.” RELATED: How I Keep My Plate Spinning, Even With MS Fatigue

And Don’t Forget: Connect Online to Find a New ‘Family’ to Support You 

Social media is a great way for people with MS to pull themselves out of isolation mode, says Craven. “This is especially true if you’re not doing well and you’re bedridden; you can hop online and go to one of your support groups or on Twitter and share your pain,” she says. “Hearing how other people are feeling and dealing with their MS can be very helpful and affirming.” Wentink agrees: “Though social media has lots of faults, it’s been great for me to connect with people from all around the world who are dealing with similar issues,” he says. It’s like having a new family full of people who get it and understand, he says. Beier concurs that online communities can be a good starting point for connecting with people. “It helps to hear that you’re not alone, that others are experiencing similar things,” she says. In addition, says Craven, the online MS community can be a great source of information on health issues around MS. “Whether it’s about vitamin levels, an MRI [magnetic resonance imaging] test result, or my doctor wanting to put me on a new medicine, it can be good to hear about other people’s experiences,” she says. “I don’t take it as medical advice, but it’s good to get feedback from other people,” says Craven. Online MS communities are a really good way to keep up on the latest research as well, she adds.