Loneliness and RA

Rheumatoid arthritis has brought a level of loneliness and isolation deeper than I could have ever imagined. It’s a profound loneliness I feared in my youth, but its true sting was unknown until it was upon me. 

Before I became ill, my social circle was vast; friends surrounded me and I was a regular at every gathering. Each weekend showcased a packed calendar of concerts, dates, girls’ nights, and outdoor adventures like hiking and camping. Now, in my 30s, I should be enjoying those same activities while focusing on family and my future, but I’m not. The invitations have stopped coming. 

Former friends no longer reach out, and gatherings seem to revolve solely around arthritis advocacy. While I cherish advocacy work, I yearn for a life beyond my illness. Unfortunately, fatigue often overtakes me, and I find it challenging to connect with the people I once knew, causing me to turn inward. Every aspect of my life has been altered by chronic illness — from my interests, daily routines, dreams, and even my spirit. 

Out of all the changes brought on by chronic illness, the loneliness and social isolation are the most painful. Although I haven’t fully conquered these feelings, I’ve learned to cope with them as best I can. There are moments when I feel surrounded by an overwhelming darkness, but I remind myself that these moments will pass, and I have the strength to endure them. 

Why Loneliness Worsens Health Outcomes

Research has demonstrated the significance of a strong support network for people with rheumatoid arthritis, as those with one tend to have better outcomes. As a single mom battling this disease, my fantasy isn’t about some hunk with perfect abs; instead, it’s about having the support network I truly need. I am aware that having the right support would improve my health and bring more happiness and fulfillment to my life. Although I possess all the necessary tools to self-manage RA effectively, the missing piece is that vital support network. 

Rheumatoid arthritis itself already puts us at a higher risk for heart disease, stroke, depression, anxiety, and dementia. However, loneliness and isolation add to these risks in significant ways. In fact, loneliness can have severe health consequences. 

Social isolation has been found to profoundly impact a person’s health, increasing their risk of premature death from various causes. Surprisingly, studies suggest that the risk associated with social isolation may rival that of smoking, obesity, and physical inactivity. These negative effects extend beyond physical health, as loneliness has been linked to higher rates of mental health issues like depression, anxiety, and even suicide. 

Research has also explored the connection between social isolation and inflammation in the body. The findings revealed that individuals experiencing social isolation had higher levels of inflammatory chemicals, which are associated with poor health outcomes. This correlation is believed to be due to the body interpreting social isolation as a source of stress, injury, or pain, triggering inflammation. Now, imagine the impact on those of us already living with inflammatory conditions. 

While social isolation and loneliness can affect anyone, certain populations face higher risks. Older adults or individuals with disabilities are more prone to experiencing social isolation due to factors such as early retirement, mobility issues, and the loss of loved ones. 

How Loneliness Affects Me

Loneliness, a known hazard to our health, often remains overlooked or not discussed enough. However, its impact on our state of mind is incredibly significant. Personally, I am well aware of this, as I feel it deep within my spirit. When I face challenges, I’ve learned to ask myself the question: Why? More often than not, the answer lies in feeling lonely and isolated. 

Here are some of the ways loneliness affects me on a day-to-day basis: 

  • Poorer sleep: Loneliness disrupts my sleep patterns. I might go to bed too early out of boredom or oversleep to pass the time. When I’m asleep, I can’t feel loneliness, but sometimes stress and frustration keep my mind awake, amplifying the feeling of being alone. 
  • Extreme demotivation: Loneliness demotivates me greatly. For instance, I’ve found it tough to get back into exercise since the pandemic hit. When I ask myself why, it’s because I feel too lonely to bother. This emotional funk has persisted since 2020, and I find myself making harmful statements like “What’s the point?” or “I’m so sick of doing this alone all the time.” 
  • Unhealthy habits: To cope with increasing loneliness and anxiety during the pandemic, I started relying more on smoking cannabis and eventually resumed drinking alcohol, which I had abstained from for three years after my diagnosis. These habits have become crutches, providing temporary relief from loneliness but ultimately harming my health and well-being. 
  • Self-esteem and confidence: Loneliness affects my self-esteem and confidence. The combination of these behaviors, the deep pit loneliness creates within me, weight gain from overeating, and poorer health outcomes all contribute to constantly questioning why I am alone and what is wrong with me. It becomes a heavy burden on my self-perception. 

What Loneliness Is Like with Rheumatoid Arthritis

There are various types of loneliness associated with living with a chronic illness. It’s not just about feeling disconnected from others; since my diagnosis, loneliness has taken on different forms: 

  • Lack of understanding from others: Most people in my life can’t comprehend the constant pain and overwhelming fatigue I experience daily, leading to a sense of isolation. 
  • Missing out due to illness: My condition often prevents me from participating in activities, either because I’m unwell, unable to afford them, or simply not invited anymore. It feels like I’m watching the world continue without me as each day blurs together. 
  • Difficulty relating to others: Connecting with people while battling a chronic illness can be challenging. I see people my age achieving milestones like getting married, having children, buying houses, going on vacations, or taking group photos with friends, while my life revolves around medical appointments and cuddling my cats at home in my pajamas. Not only do I struggle to find common ground with others, but my heart also longs for a life similar to theirs, seemingly unattainable with my rheumatoid arthritis. 
  • Experiencing constant rejection: Since my diagnosis, it has become increasingly difficult to make friends or find a partner. Even when I get along well with someone, I notice some people are hesitant to get close to me or form any meaningful relationship. The fear of rejection holds me back from letting others in. 
  • Making friends is hard: As I grow older, making friends becomes increasingly difficult. Past negative experiences have made me approach new relationships cautiously. 
  • People are uncomfortable with my health: I’ve noticed that people tend to avoid eye contact or fall silent when I mention my health issues. Though it can be challenging to bring up, I try to be open about my struggles to raise awareness and educate others.

Painful Lessons After My Diagnosis

Not everyone is accepting or understanding, and unfortunately, I learned this lesson the hard way with my own family. My aunt, who lived with RA for years before my diagnosis, faced criticism and indifference from some family members regarding how RA impacted her life. When I was diagnosed, they displayed the same behavior toward me. 

One of the most painful lessons was experiencing loneliness and abandonment from my family after my diagnosis. It’s been more than seven years now since I last spoke to them or other family members. People may snub you, and it hurts, but you must let go and move on for yourself. Learning to live for myself has been the only way to combat the horrific emotions of feeling alone. 

Sometimes loneliness hits hard, especially during weekends or holidays when spending time with others is the norm, but I am alone. Interestingly, I’ve started to crave being alone. Perhaps I’ve grown so accustomed to it that being in pain alone feels more comfortable than being around people.  

I find myself torn because I yearn for human interaction, yet part of me would rather deal with my pain and fatigue alone as it feels easier. 

Living with depression for a long time has influenced my interactions with others. In my younger years, depression made me desperate for attention and human connections because I feared being alone. But now, as my depression has changed over the years, it makes me want to withdraw from others. Plus, I am often just too tired to interact. 

My Strategies for Tackling Loneliness

To address the negative health effects of social isolation and loneliness, it is essential to increase awareness and prioritize initiatives that foster a sense of community and connectedness. This includes community events, support groups, and volunteer opportunities that provide social support and reduce feelings of isolation.  

Additionally, individuals can prioritize meaningful social connections in their personal lives, spending time with loved ones and building relationships with people around them. 

Here are some strategies I find helpful: 

  • Volunteer: Giving time to help others not only fills the void but also allows me to forge new connections. The best part about volunteering with arthritis organizations is that I meet others with similar conditions. 
  • Reach out to my support network: Keeping in touch with friends, even those met through advocacy who live far away, reminds me that I am not alone in this journey. 
  • Connect with others who have chronic illnesses online: Talking to people who understand what I’m going through can be comforting and empowering. 
  • Engage with local community centers: Attending groups or events helps me meet new people in a welcoming environment. I prefer certain times when the crowd is friendlier. 
  • Pursue solitary hobbies: Engaging in activities I enjoy brings inner peace, especially when accompanied by my favorite music on headphones. Writing, painting, gardening, cooking, going for walks, or exploring new places are some of my favorites. 
  • Get lost in self-care: Prioritizing self-care helps alleviate feelings of loneliness and is really good for me. Turning off that negative voice in my head is crucial. 
  • Take myself out on a date: Planning a special night for myself, with my favorite meal or activity, helps combat feelings of loneliness and prioritize self-care. 
  • Unplug from social media and focus on enjoyable activities: Instead of mindlessly scrolling through social media, I devote time to hobbies or activities that bring joy. This provides a much-needed break from the comparison trap of social media. 
  • Avoid unrealistic rom-coms: I find avoiding romantic comedies with improbable scenarios and clichéd plot lines better for my sanity. 

While living with a chronic illness can amplify feelings of loneliness, using different strategies to combat this isolation can be effective in alleviating some of the loneliness associated with these circumstances. 

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

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