Being in Social Situations While Managing Chronic Illness

Living with chronic illness complicates everything, including your social life. It’s worse when others don’t understand what you’re going through.

In the of summer 2020, I spent time with a sibling during the pandemic. Initially, things went surprisingly well, despite our past relationship of not getting along. I ended up staying in her small one-bedroom apartment, which meant I was on the couch most of the time. It was manageable at first, but as the months passed, my health started to deteriorated. At that point, the situation became harder to navigate. Being social with chronic illness really sucks…

My sibling is incredibly social and, despite the pandemic happening, she still wanted to go out and meet up with people. I was struggling to keep up. The more I tried to rest and take care of my body, the more I felt like I was disappointing her. She made it obvious that she was. Her disappointing sighs and constant badgering were so exhausting. She didn’t seem to understand why I couldn’t do the things she wanted to do and that just made it all worse for me.

As the fall of 2020 came around, everything with my body got way worse. It became impossible to hide how much everything was affecting me. I was also reminded why we didn’t get along all that well when we were growing up. When I would lay on the couch all day, watching Kobra Kai again for the second time because I didn’t have the energy for anything else, my sibling would be more concerned about the fact that I didn’t leaving the house, rather than my health. That was the worst.

Reducing Stress

It got to be too much. All the sensation and symptoms. The heart palpitations, the stinging pain in my arms, the inability to stand for long periods, or even carry my groceries. It was all just too much. I just needed to get away and rest.

Eventually, I told my sibling I was going to stay at a friend’s house for three weeks. In reality, I ended up booking stays at three different hotels in nearby cities. The cost wasn’t much because, with the pandemic, motels were desperate for business. For 3 straight weeks, I didn’t have to worry about being pulled into social situations I couldn’t handle, being nagged at, or being judged for resting simply because I was not feeling well. The part that gets me about all of that is, people really think that I want to sit around and just be sick when in my past, I was usually up to doing something.

By 2022, things started to improve. I had moved to a new city and began to meet new people, but socializing while dealing with chronic illness was still a challenge. Dating was practically out of the question.

Explaining my condition was always difficult. How much do you share? How do you maintain boundaries without shutting people out completely? I found myself trying to have conversations about all of this where I didn’t want to lie, but I also didn’t want to explain the whole truth, knowing it would only lead to endless questions, concern, or disbelief. The fear that people might not believe what I was going through only added the dread of socializing.

I Still Struggle

I needed a lot of validation for the things that I had been through regarding this illness and validation for my chaotic childhood. For me, there was a lack of protection and understanding growing up. There were a lot of really difficult situations that left me not feeling very good about myself. I felt like I was worthless and that there was no point.

I’ve spent so much of my life feeling distorted and confused. I wonder if others with chronic illness struggle with knowing themselves, feeling lost, and lacking a sense of self-worth. When I say it like that and write it out like this it’s no wonder my body is so hurt. Through this blog, I want to offer validation and understanding to others who might feel confused and unheard.

This illness can be very lonely. Please take good care of yourself.

Chronic illness is incredibly isolating : r/ChronicIllness

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