Unrelenting Boredom: When Chronic Illness Shrinks Your World

Unrelenting boredom.

I used to lead a vibrant life. I had issues, I just didn’t know that other people didn’t feel the same way or experience the world the way I did. I was still able to work, have adventures, do crafts, shop. I just did all the things a little differently than other people I knew. 

Then the illnesses progressed and gradually my world became much smaller. Instead of enjoying life, I now simply get through each day to the best of my ability. 

I can no longer work. That in and of itself brings a lot of issues into my life, but what I miss the most is having a purpose each day. A reason to leave the house. A place to interact with other people. 

I used to love reading and spending time at the beach. Now my chronic fatigue means I can only read so many pages before I nod off. Often it’s only for a minute or two, but it actually becomes a painful cycle of reading/sleeping/reading/sleeping. 

And the beach is a lost love. The effort of simply getting myself from the car to the sand and set up to enjoy the day wipes me out. And of course, there is only so much time I can spend outdoors in the heat. I used to try to get to the beach by 8:00 or 9:00 am before the heat of the day sets in and the plan would be to stay for just a couple of hours. That strategy stopped working and now I can’t go at all. 

I’ve had to say ‘no’ so many times when people tried to include me in their plans that now no one even asks. That makes me sad. Yet, when they do ask, I feel the anxiety of having to decline yet again or push through and suffer for days afterwards. 

My hands make writing or crafting difficult. I’ve tried introducing new hobbies in an attempt to find something to fill my time with, but I haven’t found the right ones yet. 

Every day is the same. Manage pain. Pace to help offset as many symptoms as I can. I rotate cleaning, laundry, and even washing my hair. Add in a phone call or two with a friend. Some days I might skip any cleaning or laundry and have someone take me to a store so I can get out of the house. 

That’s it. That’s pretty much what my life has become. I’m in my early 20’s. 

I keep trying new things. I keep putting on a smile and find reasons to be positive. But it’s tough to look at such a long road ahead having no idea how I can fill the journey. 

If you read this and it resonates with you, please comment. I’d really like to hear how others manage boredom and loneliness. 

The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. This week's article comes from our practice. We have had many conversations with patients regarding the extreme heat and thought it would be beneficial to share the information here. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities.