Loneliness kills. Feeling lonely on a regular basis can shorten your lifespan by 26 percent, making it deadlier than obesity or alcoholism, according to a study published in the journal Perspectives on Psychology.
One of the biggest risk factors for loneliness? Having a chronic illness. To add insult to injury (literally), loneliness and chronic illness can become a vicious cycle with your pain isolating you, and the resulting loneliness then worsening your health, according to a separate study.
“The feeling of loneliness is painful emotionally and can have a devastating impact on both psychological and physical health; including increased risks of depression, decreased immune system function, and stress to the cardiovascular system, ultimately impacting our longevity over the long run,” explains Judy Ho Gavazza, PhD, a clinical psychologist and associate professor of psychology at Pepperdine University.
“This is why I suggest connecting in person with someone at least once a week. Make sure that this time is dedicated to being with someone you care about without the distractions of technology,” she adds.
If you have a chronic illness, the fact that it can lead to loneliness probably isn’t surprising. Who hasn’t had to leave a party early, bail on dinner last minute, or ditch a phone call a friend because their pain decided to be a jerk and flare up?
But this doesn’t mean you have to just accept that this is how your life is now, says Mayra Mendez, PhD, LMFT, program coordinator of mental health services at Providence Saint John’s hospital in Santa Monica, California.
Loneliness is not another condition of your illness to be treated but rather a natural part of the human experience. While your disease may limit what you can do physically, it doesn’t have to keep you from reaching out to others, she explains. “The most helpful thing to know about loneliness is that it isn’t something that happens to you, it’s something you can control,” she says. “It’s okay to be lonely, it doesn’t mean there’s something wrong with you or that you’re broken or unlovable.”
The key, she says, is to find new, fun ways to interact with others instead of beating yourself up that you aren’t the same person you were before you got sick.
But knowing that you need to reach out to others and actually doing it is easier said than done. We asked eight people living with chronic illnesses to share exactly how they deal with the loneliness their disease brings.
‘I Help Other People with Chronic Illness’
Polycystic ovarian syndrome, rheumatoid arthritis, fibromyalgia, erythromelalgia, interstitial cystitis, hashimoto’s disease, and irritable bowel syndrome — April Copeland’s list of chronic ailments is as long as it is painful. She understandably struggled with constant feelings of loneliness and despair. That is, until her sister-in-law Shauna was diagnosed with an extremely rare and deadly form of colon cancer.
“Shauna’s illness made me realize that all my pain had a purpose, I was uniquely able to comfort her,” April says. “Who else could you talk to about weird medical procedures or embarrassing digestive symptoms than someone else who’s been through it all?”
She and Shauna made a pact to face their pain together. On good days they dyed their hair crazy colors and took silly pictures. On bad days they’d cry it out together. “Chronic illness steals so much from you. It takes your vitality, your health, your mobility. It steals events and moments. It steals the spouse and mother you wanted to be and replaces her with a tired hot mess,” April says. “But nothing can steal your joy or your faith and we determined to never let our illnesses take it from us.”
Shauna passed away February 7, 2019. But rather than let her best friend’s death send her back to a dark place, April determined she would follow her calling, continuing to reach out to others with chronic illness. “I wish everyone who is fighting a chronic illness could have a Shauna, but If you don’t have a Shauna, bea Shauna,” she says. “There is a wide world of people longing to hold your hands and be held back.”
‘I Learned to Love My Alone Time’
When Dennis L., of Columbus, Ohio, was battling stage 3 hodgkin lymphoma he was surrounded by supportive friends, family, and coworkers. “Thanks to them I managed to go through six months of chemo while still working,” he says. But in an ironic twist, once he was in remission, all those people vanished. Even though he was still dealing with the day-to-day effects of his disease and treatments, because he appeared “better,” people stopped checking in with him, which left him feeling more alone than he ever had.
He found himself in a strange limbo: Not feeling well enough to join others in all their regular activities but not sick enough to need special help. “During this time a lot of friends dropped off the radar and slowly stopped keeping in touch,” he says. “It’s like people expect people with a serious illness to just be happy they are alive and be an inspiration to others. They can’t see we’re still struggling.” But when he tried to live life like an Instagram quote personified, he just felt even more lonely, like he couldn’t be himself around others.
His solution? “I actually started to enjoy my alone time and use it to recharge,” he explains. Instead of becoming bitter that he couldn’t join his friends and family in their activities, he focused on picking up new hobbies on his own. “I’ve started exercising more and love the solitude of biking and running,” he says. “This year I plan on learning a new musical instrument, and just bought an electric guitar. Keeping busy distracts myself from the loneliness.”
Another benefit of his new hobbies is meeting new friends and reconnecting with old ones, so in a funny twist, the things he does to deal with being alone resulted in him being less alone.
‘I Plan a Girl’s Night In’
Thanks to a combination of chronic migraine and type I diabetes, Amanda S., of Westminster, Colorado, says she finds herself feeling lonely more often than not. The constant pain keeps her from many social activities and on the occasion the pain does relent and she can join her friends, she still finds herself feeling isolated due to all her dietary restrictions.
“I try really hard to avoid sugar and dairy, both for the headaches and the diabetes, but that means I have to avoid most celebration-type foods,” she says. “Do you know how much it sucks to have to watch everyone else eat ice cream, birthday cake, and cheese sticks but not be able to have any?” Feeling lonely in a crowd of people is a particularly painful type of loneliness, she adds.
To deal with this, she’s started planning low-key activities at her home, where she has more control over the food, lighting, noise, and other potential triggers. She invites a few girlfriends over to watch movies or cook together.
But her favorite person to invite is her 14-year-old daughter. “This has actually been a surprise gift, to spend this time with her,” she says. “We talk, do face masks, play games, or whatever and if I start to get a headache she doesn’t judge me, she just rubs my head, which is the best thing ever.”
‘I’m Healthy and Free in Online Video Games’
Video games may get a bad rap, but for Justin K., of Honolulu, Hawaii, they have been a lifesaver — literally. “When I was first diagnosed with reactive arthritis I thought I could just hole up and wait for it to go away, except it never did,” he says. What did go away? His friends. Even his roommates avoided him, partly because they didn’t want to make him feel bad for not surfing and climbing with them like he used to and, he admits, partly because of his attitude.
“I was angry at everyone and everything. I’d been this super fit young guy and now I’m basically an old person,” he says. To make matters worse, he’d moved to Hawaii for the outdoor sports. But temperature swings from being outside are one of the primary triggers of his arthritis flares. “I became a hermit, totally wallowing in my depression, self pity, and loneliness,” he says. “I blamed my friends for leaving me but the truth was I left them just as much.”
Then, one day, a dedicated friend turned up at his door and introduced him to the world of Esports — online, competitive, multiplayer video games. Justin quickly became immersed in League of Legends and Counterstrike. “I’m as healthy as I want to be online, I can do anything,” he says.
The quick rewards for achievements boosted his mood and made him feel accomplished but the real benefit is in the online community he found, he says. “I play every day with people all over the world and while we play, we talk,” he explains, adding that he’s particularly bonded with an ex-soldier who got a spinal injury in Iraq and has experienced a similar grief cycle. “They’re like brothers to me now. If I don’t show up one day, they’ll call. If I have a doctor’s appointment, they ask about it. If I cry, they give me so much shit. I know I have people who care about me.”
‘I Joined a Support Group for People with Chronic Pain’
For the past decade, Kevin L., of Edmonds, Washington, has struggled with chronic TMJ, and neck and back pain. His joint issues are physically isolating, such as when he has to bow out of family get togethers, but they’re just as emotionally isolating, he says.
“It’s difficult when I tell people that I have debilitating TMJ (problems in the joints and tendons of the jaw) because often they say something like, ‘Oh that, I’ve had that, it’s not that big of a deal.’ I want to say, ‘But did it feel like someone is constantly piercing you in the temples with an ice pick? No? Well, it is a big deal.’ Obviously, I don’t say that, but it makes me feel very alone, like no one can really understand what I’m going through,” he explains.
Then Kevin’s wife joined the choir at their neighborhood church and discovered the church also has a support group for people dealing with chronic illnesses. She encouraged Kevin to go and even though he was skeptical at first, he checked it out. It turned out to be exactly what he needed.
“The thing that struck me the most at the first meeting was all these folks had multiple chronic illnesses but they laughed so much! They have such a wry sense of humor, which is my favorite kind,” he says. “For the first time since the pain started I felt like, ‘Wow, ok. So my life isn’t over. You can live with the pain and still LMAO.’ I found my tribe.”
‘I Attend Silver Sneakers Classes’
It’s the catch-22 of arthritis — exercise is one of the best ways to deal with the pain and prevent flares but joint pain can make movement feel impossible. So when Martha D.’s doctor wrote her an “exercise prescription” she crumpled it up in her purse without even looking at it. The 64-year-old, from Fort Worth, Texas, has dealt with arthritis and fractures in her spine for years and had practically given up on having a life, much less an active one.
“I live alone so there was no one telling me ‘Come do this with us’ and my friends have all moved or are busy with their kids’ lives, and the pain made it so I didn’t want to go out anyhow,” she says. “I was so lonely I used to talk to the characters on sitcoms like they were my friends.”
Then, a few days after that doctor’s appointment, she was searching through her purse and found the “prescription.” On it, he’d listed Silver Sneakers and a website. SilverSneakers is a nationwide program found in gyms and community centers that provides fitness classes and group activities geared toward people in their golden years. The program is inexpensive or even free for many elders (check here to see if you qualify).
She found a class that said it was appropriate for seniors with long-term illnesses or injuries so she decided to try it. “I had nothing to lose except maybe a little pride,” she says. She quickly bonded with the other women in her group and now they exercise together four days a week and often go out for coffee afterward. “The program has been the best thing that’s happened to me. My blood pressure is down, I’ve lost weight, I have less pain, and, oh, I haven’t talked to the TV in weeks.”
‘I Live on Social Media’
Social media can be harmful for some people but for those who are housebound due to a chronic disease, it can be a godsend — their main connection to family and friends. Mary R., of Columbus, Ohio, has rheumatoid arthritis but years of taking medication damaged her kidneys, adding a second chronic illness, chronic kidney disease. With RA she was able to mostly maintain her social life, with adaptation, but the CKD ended all that.
“I used to be a gym rat and that was my social life but lifting weights is out now, because my creatinine levels can’t be elevated,” she says. “Plus the disease makes me tired — I’m asleep by 8 p.m. — and, to be totally honest, I have to stay very close to the bathroom at all times. This makes any type of socializing incredibly difficult.”
Desperate to maintain her friendships and stay up on her loved ones’ lives, she turned to social media. “I so miss actually being around people but Facebook, Messenger, LinkedIn, and Instagram are a good way to feel connected, at least until I get a replacement kidney.”
‘I Love on My Pets’
Pets are a powerful therapeutic tool, with research linking them to a reduced risk of depression and heart disease, lower stress levels, and an increase in exercise. April O., of Phoenix, Arizona, would like to add more benefits to the list: less loneliness and more love. Thanks to chronic pain related to endometriosis, she often finds herself confined to bed.
“The hardest part is that I’m aware of what I’m missing out on. With chronic conditions, friends, family, and work go on with or without you,” she says. That knowledge, combined with the pain of her illness, can quickly lead to depression and isolation. Thankfully, she has furry friends to keep her company even during her worst flares.
“I don’t know what I would do without my pets, they are very therapeutic,” she says. “The dogs will bring me toys to throw, and the cats will curl up on my sore hips and act as these little hearing pads. When I’m feeling awful, or missing out on a special event or activity due to a flare up, my animals remind me to stay present. Plus, taking care of them gives me a sense of purpose, a reason to keep trying.”
