The Loneliness That Comes with Chronic Illness

The Loneliness That Comes with Chronic Illness

I’m on a train, on my way to see a specialist in London. I’m cold but am somehow sweating. I have a book with me, but I lack the focus to read. I have hunger pangs, but my throat tightens at the thought of food. I’m surrounded by people I could talk to, but they’re all strangers. I can’t tell them why I’m scared, nor can I explain that I am chronically ill and lonely. 

I’m British, so I could easily trick the guy sitting next to me into a friendly chat about the horizontal rain that is hitting our train. But that’s not what I need to get off my chest. No one wants to listen to what I want to talk about: my upcoming appointment, my endometriosis, my fear of never getting better, my loneliness.

There’s a lot to unpack here. I am a decent amount of work for any therapist who would like a challenge. But I’m not the only one struggling with my mental health and experiencing deep feelings of loneliness. They are common among the chronically ill. 

Statistically, no one in our immediate social circle is likely to experience symptoms of chronic illness. We don’t all have a supportive partner to sit with us at every medical appointment. Chronically ill people can be single, too. 

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Where I live — dark and a tad isolated, but oh-so-pretty. (Courtesy of Jessie Madrigal)

Illness is socially isolating. We cancel or bail on social commitments more than others because of a flare-up or in the name of self-care. After a while, our friends stop including us, or we lose the habit of going out. Either our social life gives up on us, or we give up on having a social life.

We don’t reach out when we are told to because reaching out — and this may surprise some — often doesn’t work.

Telling others to reach out is an odd request

You don’t tell someone dealing with worrisome physical symptoms to reach out to loved ones. You tell them to talk to a doctor. So why are we telling people who are struggling with their emotional and mental health to do the same? I may contact a friend when I’m OK, but I won’t reach out when I am struggling. I don’t even have the energy to speak, and I’m scared of rejection. 

Currently, one of my dogs is very sick. I spend almost every night cleaning up his mess, constantly checking that he is comfortable. Sleeplessness and stress are making me bleed and hurt. I reached out to some friends, but their lives were too saturated to comfort me. I had to suck it up, manage my symptoms, and continue to care for my dog. I rode the train to London, exhausted, scared, and alone.

Whenever I am rejected, I feel small and worthless. Then I remember that I have the best person nearby: me. I’m a pro at self-care. I know better than anyone what I need. 

Me, myself, and I

Sometimes my weak arms, my busy head, and my wobbly knees are all I get, and that’s fine. I get my dogs, too, as they are practically attached to my sore hips. Loneliness is a shadow that permeates my existence. My endometriosis sits on the sidelines, throwing punches whenever life gets tough. 

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The reasons why I’m never truly alone, not even in the shower. (Courtesy of Jessie Madrigal)

We all navigate this world alone, but people with a chronic disease are in an especially isolated position. 

If you know someone who is chronically ill, don’t wait for them to reach out. Bring them coffee, offer to walk their dogs, call them, or send a funny message. And please don’t reduce them to their illness. Invite them to be part of the cool gang, make them feel normal, and include them in your plans, even if they cancel once, twice … or thrice.


Note: Endometriosis News 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 Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.