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My Loneliest Moment as a Young Person With Chronic Illness

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I walked into the room. At the age of 34, I was 20 years younger than every other patient in the ever-so-exciting “Joint Replacement Class.” I had walked this path already once before, and now 15 years later, here I was again. We were told to sit around the table, and then it happened — one of the most embarrassing and isolating experiences in my journey with chronic illness — one that to this day, I have never forgotten.

There I sat, waiting for my joint replacement class to begin. Patients were told to sit around the table, while families sat on the outskirts of the room. I took my seat and waited. No one at the table was even close to my age. The instructor looked around the room, and her eyes stopped at me. “Please remember, only patients should be sitting at the table, families should be behind them.” We locked eyes, and I nodded, and then she started talking to others.

As she got ready to begin the class, she once again made the same proclamation, while looking straight at me. I nodded, feeling the embarrassment rise. She looked frustrated and clearly thought I was not listening or just being difficult.

Deciding not to press the issue, she began the class with a simple question, “How many of you at the table have ever had a joint replacement done?” Across the room from me, a little grandma sitting in a wheelchair raised her hand. I looked around the room, and only she and I had our hands up. Out of a room of over 30 patients, we were the only two who had ever had a joint replaced.

I was only 34 for crying out loud, and this was number two, and the only other person in my boat was over 80. I cannot even describe the thoughts and feelings running through me, but sadly, it did not stop there. The instructor looked at me once again, while addressing the class, and simply said, “Now, I don’t mean you know someone who has had a joint replacement, but you have had one yourself.” I kept my hand up, nodded, and mouthed “yes.”

Looking at me in disbelief and frustration, she said something that I have never forgotten, “You must be mistaken or confused, but let’s move on.” I felt every eye focused on me. Ashamed, angry and embarrassed, I wanted to be anywhere else. I could not believe what had just happened. It was humiliating and reminded me in front of everyone that I was alone and different. I felt like no one understood what I was dealing with.

Years later, this simple interaction has stuck with me. Ten years later, I can find humor in it and laugh at the ridiculousness of this event, but it is a moment in time that punctuated the fact that I was different and there were very few like me. I have never felt the feelings of isolation stronger than at that meeting.

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For those of us who are younger, battling chronic illness is not just hard, it is very lonely. You see, it often feels like no one in our age group experiences this. Most people walking through this are the age of our parents and grandparents. Resources, support groups, activities all focus on a much different age bracket.

Thankfully, at the end of the meeting, the nurse looked at my chart, realized her mistake, and apologized over and over again. While hurtful, I could understand her disbelief. I mean, how many 34-year-olds have had two hip replacements? She was not trying to be hurtful, but unfortunately, she was.

Chronic illness can be isolating and sometimes embarrassing for those fighting it. As if the daily struggle of pain and exhaustion is not enough, we often find ourselves having to explain ourselves to others who just don’t get it, or we battle the perception that we are being overdramatic, or that it really is not that serious. This causes feelings of isolation, hurt and misunderstanding.

It is embarrassing feeling different and hard being in pain constantly. It is hard having others not take the battle seriously or dismiss our struggle, because the struggle is real. It can be hard battling chronic illness at any age, but for those of us on the “younger side,” it is very lonely. Thankfully, due to social media, I have begun to find others like me, and this has helped on this journey.

Being young with chronic illness is not fun. Being in pain daily is a struggle. Being young and fighting this battle can be overwhelming and lonely. If you know someone in this state, be sensitive, look for ways to help, and simply encourage them by taking their struggle seriously. Thankfully, I have many around me who care for me and help me, and remind me that I am not alone in this fight, and that gives me the strength and courage to fight another day.

Take time today to be that person in someone’s life. You will never know the difference it makes, and the encouragement and strength it gives to those of us fighting this uphill battle. These simple things give us hope and help us see that we truly are not alone.

Getty image by Antonio Guillem.

Originally published: July 9, 2020
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