Long-Term Loneliness: The Hidden Suffering Of The Chronically Ill

Long-term loneliness is an epidemic among chronically ill individuals. Here's one way to take the first steps toward fruitful change.

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I was 32 years old when I had my first serious battle with loneliness. Gradually, I began to develop a list of health problems. Dizziness. Insomnia. Fatigue. Heart palpitations. A burning sensation along my spinal cord and in my brain. Weight loss. Sensitivity to light and sound.

I dragged myself from doctor to doctor—close to 20 of them in all—but none of them knew what was wrong with me. Eventually, I had to take a three-month medical leave of absence from my job as an occupational therapist. I had high hopes that 12 weeks of rest would revive my drained body, but that’s not how things played out. Three months turned into nine months, and I was involuntarily terminated from my employment because I was too sick to return.

My body was weak, and my spirit was crushed. How was it possible that I built a career by helping people, and yet, I was unhelpable? I felt like a failure, and I wondered why my body couldn’t just plow through these crippling symptoms. Instead of toughing out the mysterious illness, one day, my body collapsed, and I could no longer get out of bed. As my health continued to decline, I spent my days maneuvering between the couch and the bed.

“Whereas most people associate loneliness and isolation with interpersonal loss, those with CMCs (chronic medical conditions) also experience the loss of control over their bodies and the impact that has on their identity and relationships.”

—Elizabeth Aram, PsyD

Sadly, I became too ill to leave the house or, at times, even talk on the phone. I lived with my husband, who had been forced into the role of my caregiver, and my two senior beagles. One by one, I lost contact with my friends, and most of my family lived out of state. Months passed before I had any face-to-face contact with other people. I was profoundly lonely—I craved human contact—but my symptoms isolated me from everyone except the medical professionals who were trying to help me.

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After a few years, a doctor diagnosed me with a persistent case of Lyme disease—an illness that, when not caught in an acute stage, can lead to chronic and disabling symptoms. At the time of my diagnosis, I’d been bedridden for nearly two years. The prolonged period of social separation was undoubtedly the darkest time in my life, and I’ve had an ongoing fight to regain some semblance of my former self.

During my journey toward healing from a chronic illness, I’ve learned that many people battle feelings of loneliness and isolation. A survey conducted on behalf of the American Osteopathic Association found that 72 percent of Americans have felt lonely.

With so many people lacking meaningful relationships, I began to wonder what effects long-term loneliness has on our health. And for those of us with chronic illnesses, can the drawn-out periods of loneliness influence our symptoms? Let’s take a closer look.

Who’s affected by loneliness, and how does it impact our health?

“Loneliness and isolation affect all human beings, so patient demographics are widely diverse in age, gender, race, culture, religion, and socioeconomic status,” says Elizabeth Aram, PsyD, a licensed clinical psychologist in Illinois.

“Another subgroup of patients whose experience of loneliness and isolation are particularly poignant are those diagnosed with chronic medical conditions (CMCs). Whereas most people associate loneliness and isolation with interpersonal loss, those with CMCs also experience the loss of control over their bodies and the impact that has on their identity and relationships.”

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Although much of the research surrounding loneliness has been done on the senior community in America, it seems no one is immune from its impact. In 2017, the American Psychological Association released a statement at their 125th annual conference which read: “Loneliness and social isolation may represent a greater public health hazard than obesity, and their impact has been growing and will continue to grow.” Ultimately, long-term loneliness may place people at a greater risk of experiencing negative physiologic changes in the brain and body.

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“Long-term loneliness is also associated with inflammation and dysfunction in our immune, hormonal, and cardiovascular systems,” says Aram. “It can increase levels of stress hormones, overwork the heart, and reduce the quality of sleep. Over time, the damage can limit our ability to fight infection and heal after trauma.”

“On the positive side, I believe many people ultimately adjust to pain and loss and learn to view their strength and resilience as part of their story.”

—Elizabeth Aram, PsyD

“Moreover, as we age, it is important to keep our brain stimulated to protect from degenerative conditions like dementia. Without adequate opportunities for social connection and mental stimulation, we may experience greater deterioration in cognitive and emotional functioning.”

Why are so many people lonely?

“Lack of support is just one of many factors that contribute to loneliness. Failure, disappointment, regret, rejection, emotional invalidation, pain, and loss are all frequently associated with experiences of loneliness or isolation,” says Aram.

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A 2015 study in Health Psychology noted older adults who have chronic illnesses were more likely to report feelings of loneliness. But chronically ill individuals of all ages struggle with loneliness and social isolation from their family and peer groups. Aram cites limitations to freedom, mobility, and social connections as contributing factors to the feelings of loneliness and social isolation—though more research is needed to find out just how widespread these issues are among other age groups.

“On the positive side,” Aram says, “I believe many people ultimately adjust to pain and loss and learn to view their strength and resilience as part of their story.”

Although Aram has never met me in person, it’s as if she read my mind. Through my personal experiences with long-term loneliness, I too believe people can adjust to pain and loss, persevere, and discover newfound strength and depth. So, how do you make it through the desolate sea of chronic illness and symptoms that isolate you and come out on the other side?

How do you navigate loneliness?

My sincerest desire for chronically ill individuals is that I could provide easy answers to overcome feelings of loneliness and isolation, but that isn’t the case. Like many aspects of treating and healing from an illness, combatting loneliness and isolation requires commitment, self-care, and, at times, willingness: a willingness to be temporarily vulnerable and try something different than what you’re accustomed to doing.

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Adrienne Clements, a licensed marriage and family therapist associate, integrative psychotherapist, and relationship counselor in Texas, says loneliness and isolation require both internal and external actions to overcome them. “The first step is to name and accept what you are feeling and remind yourself that loneliness and isolation are normal human experiences which are trying to motivate you to connect. Without awareness and self-compassion, it’s hard to take action to create positive change,” she says.

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While many of us with chronic illnesses have felt the yearning for human interaction like Clements describes, we become static—unsure of what to do next. Clements adds, “Second is to identify some reasonable ways to increase your connection with others, and then force yourself to take action in spite of the loneliness.”

“Examples include reaching out to friends or family members instead of waiting to hear from them, getting out of the house—whether to connect with friends or simply to be in public and around others—get a pet, and get involved by volunteering or joining a club or group.”

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To further the idea that all individuals, including those who are chronically ill, must implement steps toward fruitful change, David Kaplan, PhD, chief professional officer at the American Counseling Association, suggests inviting people to your home. “It may be for just a few minutes, but it is the quality, not the quantity of social relationships that counts. Being around someone you truly like for 15 minutes is more beneficial than spending an entire day with a family member that you can’t stand.”

Does social media impact isolation? Can our online relationships break the loneliness and isolation many of us feel?

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Aram cautions against the use of social media to combat loneliness and isolation, though she affirms it has its place, “I think social media has both positive and negative influences on our experiences of loneliness and isolation. It can be a source of connection for those who have limited mobility, as well as a celebrated source of entertainment and personal expression,” she says.

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“On the other hand, we live in a comparison culture where technology makes it easy for us to see the idealized version of everyone’s lives. Thus, some may experience social media as a constant reminder of what they are missing, leading to feelings of frustration and low self-worth.”

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But Kaplan says as much as he—a part of the baby boomer generation—would like to say that social media makes our situations worse, there is little research to back up this claim. Instead, he says, “Healthy social relationships are healthy social relationships. If the relationship happens through social media, that is fine.” According to Kaplan, the primary key to relationships on social media is “to terminate the unhealthy ones.”

At what point should you seek professional services?

If, despite your best efforts, you can’t seem to shake your feelings of long-term loneliness and isolation, you should seek out a mental health professional.

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“A person should seek professional help from a therapist or doctor if loneliness or isolation is making it difficult for them to function in their daily life or they are experiencing suicidal thoughts,” Clements recommends. “Loneliness can be overcome, but only with self-action and support.”

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