My Awkward Social Life as a Teenager With Chronic Illness


When people ask me how I am, I often lie. I think many chronically ill patients can relate. We always say “I’m OK” or “I’m fine.” We aren’t, but that’s what people want to hear. When people ask how you are, often it’s because they’re trying to be polite. Usually they don’t want to hear your long story about your symptoms and medical history. Whenever I’m out being social (which isn’t often) I want to act as “normal” as possible. I want everyone to treat me like they would anyone else. I don’t want to be negative and all about my disease. It’s hard though, because my whole life revolves around my illness.

I don’t know what small talk is anymore or what it’s like to be a “normal” teenager. Often I feel like an outcast. I feel different and uncertain about how I should act around others. I don’t know what my friends go through on a day-to-day basis. All I know is being sick. I don’t remember what it was like being healthy. So when someone tries to talk to me, often I don’t know what to talk about. If I mention my disease, the conversation dies and it becomes super awkward.

Tomorrow is prom… I’m going to try to go hang out with a group of people. Some of them I know, some I don’t. They are going to get ready while I hang out. Then we are going out to dinner and taking photos. I wonder how it’s going to go. I have been really sick lately, so I  will definitely need my cane, maybe even my wheelchair. It depends on if I go to all of it. I know I can’t go to the actual dance, because of my neurological symptoms. My mom said the restaurant will be crowded and loud, too. That is not good for me because I’m very sensitive to light and sound. For example, when someone is talking at a normal volume, to me it sounds like yelling.

Everyone will be nice, but sometimes it can be petty uncomfortable for me to be social. I wish I could be social without it being difficult for me. I wish I could do everything I wanted. Unfortunately, that’s not how it is.

image
Kali and a friend.

It’s OK, though. Everything will fall into place like it’s supposed to eventually, including my social life. For now I have my family, my Lyme disease friends, and a few other friends supporting me. In the future, I can make new healthy friends. All I need is to be myself. That’s always been one of my values. If people don’t know how to act around me, that’s their problem. I should feel comfortable being me. I shouldn’t feel embarrassed or ashamed about being ill. I don’t need to worry about what other people are going to think. I need to live my life to the fullest.

Follow this journey on Kali’s Blog.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Lyme Disease

four teen girls wearing green shirts standing on a dock

What I Wish I Could Tell Myself When I Was Diagnosed With Lyme Disease in High School

After years of sickness and hundreds of tests, a doctor finally diagnosed me with chronic Lyme disease in October 2011. I missed my sophomore, junior and most of my senior year of high school. The high school years are already complicated, but add a chronic illness into the mix. Those years were extremely sad and here [...]

When Taking Amtrak in a Wheelchair Revealed a Frustrating Truth About Accessibility

Until last February I always (naively) believed that for the most part we lived in a disability-friendly world. I thought surely in this day and age things would be easy for those who had to use wheelchairs, canes and walkers. I was wrong.  Really wrong. I am shocked and saddened by what I have found since [...]

What I Remember on Days I Don't Feel Beautiful With Chronic Illness

When I met my husband six years ago, I was a svelte size four or maybe, on a “bad” day, a six. I worked with a personal trainer and ran three miles most days. I had a closet full of trendy clothes and like most women, a deep desire to be considered beautiful. While I [...]
three women hugging each other outside

12 Tips for Healthy People If You Encounter Someone With an Invisible Illness

When Florida State played against Louisville in football a couple years ago, somewhere along the way player Jameis Winston hurt his leg, resulting in a limp for the remainder of the football game. During a post-game interview he stated, “Pain is temporary,” and was praised for his persistence despite the ailment. I say kudos to you [...]