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.
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.
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Hi, my name is Kali! I love reading, watching tv shows, researching things I’m interested in, and cuddling with my therapy cat Naya. My dream is to go to film school and then work as an actress and tv writer. I love storytelling and it’s been a great way for me to distract myself when I’ve been really sick. I love to travel. My favourite city is London. I would love to live there someday. I have been lucky that I’ve been able to travel some despite my health and all I have to do medically. It’s definitely more difficult to travel, but I’ve always had the mindset that I’ll figure it out and I have. I may have to do things others don’t, but that doesn’t stop me from trying to do the things I love. I have been apart of the chronic illness community for many years. I was born three months premature in Vietnam. I was adopted by my parents and have lived in the USA my whole life. I have Ehlers Danlos Syndrome and have multiple comorbidity conditions, such as GI motility disorders, GERD, POTS, inappropriate sinus tachycardia, MCAS, peripheral Neuropathy, neurological issues (seizures, on and off paralysis etc.), chronic fatigue/Epstein Barr, hypoglycaemia, urinary retention etc. I have also had Chronic Lyme and other tick borne illnesses. I started having symptoms as a very young kid. I first just had joint issues and would hurt myself easily. Then when I was in third grade I got bit by a tick and developed other symptoms. That’s when I started getting more sick. I was mostly functional until I was in 9th grade. I started missing a lot of school and had to drop out in 10th. I have been mostly homebound since then (about 7 years). I am in a power wheelchair, hooked up to my TPN or other infusions 24/7, have a gj feeding tube, I use urinary catheters and spend most of my days and nights doing medical treatment, going to appointments, and calling people. I like to raise awareness and connect with others going through similar things. Being chronically ill can be very isolating, but we are not alone. I have learned many things throughout my medical journey and I wouldn’t change any of it. I try to stay positive, optimistic and continue to think about the future and have dreams on all I want to do. I’ve learned life is precious and I try to live without regrets. One of my favourite quotes is, “every day may not be good, but there’s something good in every day.”
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