How becoming a pen pal and writing letters can combat isolation
When living with chronic illness, connecting with others can be challenging
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Living with lupus has taught me that the wellness journey doesn’t just include following a rigorous treatment plan. It is a journey of finding ways to adjust and live — not just survive — a life that has been flipped sideways with chronic pain and erratic, life-threatening flares.
There is no single answer for what to do to “get well.” We patients frequently have to make adjustments to react to symptoms and flares. But every person is different, and only you, your family, and your doctors can determine what is most helpful to you. The rest of us can only share our own lived experiences.
In order to pursue wellness, we must address both physical and emotional challenges, and create our own sense of hope.
Social connection is vital
Chronic illness can shrink a person’s world. With fatigue, brain fog, and the sheer mental load of medical appointments, socializing can feel like an impossible task. I sometimes withdraw from people because explaining my condition feels so taxing it’s like having a second job.
This solitude can obviously exacerbate both depression and anxiety. Yet while communication is critical for maintaining friendships and escaping that isolation, talking can be exhausting. Cognitive impairment can make it difficult to have conversations. Even texting and emailing can be a challenge when vision is impaired.
Social connection is important for our well-being. But what do we do when lupus traps us inside ourselves? One answer I’ve discovered is letter writing, such as with a pen pal.
Joining a snail-mail group, a pen-pal society, or a letter-writing club can be a social lifeline. Some wonderful organizations are paving the way in this respect. Chronic Hope Cares matches people with chronic pain, illness, and disability to combat isolation. The Dear Jack Foundation’s Letters with Love quarterly program supports young adults with cancer while they are going through treatment. And promoting the belief that “a handwritten letter has the special power to heal,” Girls Love Mail gathers encouraging letters and sends them to cancer centers for women newly diagnosed with breast cancer.
Last summer, Lupus in Color launched Dear Butterfly to connect lupus warriors through handwritten letters. Their goal is to gather 1,000 pen pals who are “thoughtfully paired to exchange encouragement, share pieces of their journeys, celebrate victories, and remind one another that no one has to navigate lupus alone.” I’ve signed up.
The thought of having a pen pal feels nostalgic to me. I remember my best friend in middle school, who had unbelievably perfect penmanship, and although she never wrote in cursive, her print was smooth and pronounced on loose-leaf paper. We often passed notes between classes or on the bus heading into the weekend. In high school, letters and small packages maintained a first love hundreds of miles away. That letter writing was a lifeline to me.
Letter writing isn’t a cure for lupus, of course, but it can be a vital thread in a larger web of care that we choose to weave. I am looking forward to the slow unfolding of friendships with people who truly understand the journey of living with lupus.
Lupus has already taken enough from me. I refuse to let it take my ability to encourage others and be encouraged myself. Who knows, maybe the hand that writes will bring some preteen silliness or even a new love.
If you’re feeling the weight of loneliness, I encourage you to pick up a pen and write a friend. You can start small, set your own pace, and find a community that respects your unique rhythm. Let’s start connecting and making new memories, one letter at a time.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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