Living with multiple sclerosis (MS) can be very isolating. This condition often creates feelings of being disconnected from others and the world. Many feel the longing to belong and forge relationships as they could before their diagnosis.
After posting an article written by MS advocate Devlin Garlit, we received an overwhelming response from community members. As Garlit said, “The loneliness of MS goes way beyond longing for physical company. Even among friends, it’s easy to feel left out of the conversation and like I don’t belong.”
To explore the many ways MS often feels isolating and understand some of the ways community members have found new connections, we are sharing some of the feedback and advice posted. Their thoughts follow below.
The unconditional love of pets
One common theme was the way pets help to fill the void left by friends or colleagues. Pets provide comfort, companionship, and a listening ear, no matter what. Pets can also offer a sense of purpose and unconditional love, even on the worst days.
“Try a pet. Most animals don’t judge. They will befriend you and cherish you. A good pet will go at your pace and treat you like the center of their world.”
“This is why my doctors wanted me to get a companion. I rescued Jesse 6 weeks ago, and I’m so glad I have her!”
“My husband calls me the ‘crazy cat lady.’ We live on a farm, so I have a total of 30 cats, 4 of them in the house. I’m alone every day with my cats, 3 dogs, and 2 horses. I love them all. I probably wouldn’t be here if it weren’t for them. Great therapy for me.”
“I have many acquaintances and very few friends. My dog and cat are my best friends.”
“Having a pet does the heart good!”
Struggling with MS fog
The effects of MS can be taxing on the brain. Many community members say they struggle to comprehend and remember things as easily as before diagnosis. This brain fog can create a gulf between those with MS and others. It is hard to maintain a sense of belonging when keeping up with conversations or current events feels draining.
“Half the time my brain cannot process what is being said in the moment, but 3 seconds later my brain gets it. When I’m feeling MS-y I do lag in conversations and struggle. Parties are a nightmare.”
“I continued to work until I couldn’t. I often misspoke, like saying ‘red’ when I was trying to say ‘green.’ People who I worked with for years, I couldn’t remember their names right away, I was misplacing things, etc. Clearly, I couldn’t continue to work where a distraction could be deadly.”
“I have problems reading now. I just don’t comprehend the info like I used to.”
“Talking tires me out. I find that using my brain is so fatiguing. Even laying down and talking to my best friend on the phone, I am exhausted.”
Loss of a job leads to disconnection
Leaving the workforce, either for disability, retirement, or termination, has a large impact on belonging. Part of one’s sense of identity is lost when no longer tied to a career. The relationships and daily interactions with coworkers disappear. Even if challenging at times, those relationships provided social interaction.
“Belonging is such a basic need. I really miss working. I completed a master’s degree later in life and wasn’t able to use it very long because MS made it hard.”
“I have had to find new outlets and reinvent myself because I can’t do what I was identifying myself as.”
“I have been on disability from work almost 2 years now; I do not miss the daily stress and trauma to my body but I so miss the variety of people in life!”
During this time of COVID-19, the physical isolation already felt with MS has become more pronounced. Having a chronic illness can make the risks of contracting the virus dangerous. The further reduction in social interaction is difficult and takes an emotional toll.
“I am more isolated than I used to be. Either don’t have the energy or COVID prevents us because taking Gilenya puts me in a higher risk group.”
“I don’t feel like visiting anymore, but I need to know someone still really cares. Even before the virus, I was not able to go out. I have only been out a couple of times since around Christmas last year.”
“My social life has drastically changed, and COVID has only pronounced those changes. I used to think my social life was OK as long as I got out once a week with a friend, but I’m learning that wasn’t enough before, and having nothing now only highlights it.”
“With the pandemic, I feel even more cut off from others, and the loneliness increases. On the other hand, I believe most everyone feels cut off from their normal life and social activities. This forced isolation has helped people without a chronic illness begin to understand and empathize with our daily norms.”
“I’m an introvert, but even I am feeling lonely when I can’t hug my kids or grandkids.”
“When my family buys groceries for me, they put them on the ironing board in the garage. I want to throw caution to the wind and go out and just wrap my arms around them. Lack of human touch is detrimental to me and makes it hard to keep on trying.”
“I often feel lonely, even when I’m around others. Being around family is even worse. It’s such a big ordeal to get into their houses. Then the holidays are coming soon. I think I’ll just stay home instead of feeling like a stranger around my own family than having to leave after just an hour or 2.”
Finding comfort from faith
Many find comfort and connection in a faith tradition. Seeking God or a higher power helps provide some with a sense of peace. Connecting to the feelings expressed in a tradition’s sacred texts or music helps many to feel less alone.
“I read the Bible a lot. I get comfort, as many of the Psalms discuss lots of feelings. I do understand the sad loneliness.”
“I try to find music that speaks to me. I find the Psalms comforting.”
“Finding another area of interest really went far to help me feel like I fit in. Discovering how many people go into the ministry after dealing with serious and ongoing health issues made me feel like I fit right in. Discovering that I had been ‘called’ to seminary rather than ministry made me feel like a fraud at the time, but I recovered! Feeling as though we fit in is important because the guilt and shame of being chronically ill is hard to get over.”
Thank you to everyone who opened up for this story. It is our hope that reading about others’ experiences helps community members to feel validated, comforted, and connected with others who are going through the same things.