Dear Sick Teenager: You Have the Potential to Do Great Things


Dear Sick Teenager,

The day you got sick you had no idea you wouldn’t get better. You went to countless doctor appointments and spent hours answering the same routine questions, only to be told, “You’re not my patient.”

You’ve had to face the challenges of a new life, but more than that, you’ve had to face the challenges of those who don’t understand your illness. In spite of these challenges, you have the potential to do great things. You will overcome and be a more powerful leader because of this adversity. You will be determined, have a unique perspective and greatly affect the lives of others.

How do I know this? Well, I was a sick teenager, too.

I’m not sure if you felt this way, but for the majority of my childhood, I didn’t feel that I was different. Like every elementary and middle school kid I took pride in the idea of being “normal” and fitting in. This is a huge challenge for people facing chronic illness, since we fear we’re going to miss out.

My story began with eight years of searching for answers to my health questions. Around my 16th birthday, I was diagnosed with hereditary angioedema (HAE), an extremely rare, potentially life-threatening, genetic disorder that causes swelling and severe pain. I had anxiously anticipated receiving a diagnosis for years and then was just left with more questions. Having a name for what I was going though was reassuring, but being such a rare disease, it had little to no treatment. As a result, I had to learn to manage my pain and triggers.

Creative self-expression and faith were major aspects of managing pain and triggers for me. If you haven’t started learning your triggers, begin today. Learning about what can make your illness more or less manageable is a valuable asset. This self awareness and knowing your physical limits is very important and the best strategy you can implement for your body. Not only will recognizing your triggers help you feel better, but you will also have a unique awareness of your body and perception of others. Being acutely aware of your pain and what impacts it can help you notice struggles in others making you more empathetic.

Shortly after my HAE diagnosis, I became very ill but knew something else was wrong. I was a sophomore in high school and wasn’t even able to attend school. That’s when my favorite outlet became creativity and faith. I had just gotten my drivers license, the ultimate independence a 16 year old could ask for, and then it was all taken away.

Separating out the new symptoms from my HAE lead to the discovery of postural orthostatic tachycardia syndrome, an autonomic nervous system disorder that affects the heart, making the completion of even simple tasks feel like I’m running the last leg of a marathon. This diagnosis left me wondering how I could manage one more thing. Once again, my best option was to draw closer to my faith and loved ones and learn to accept help and a new lifestyle. I believe it is okay to be frustrated and mad, but take that sense of strong emotion and channel it all into something positive and something you care about.

Hopefully, while learning your triggers, you learned enough about your personality and body to find your passions in life. Explore these interests by whatever means available. Watch YouTube videos, read blogs and books, and do some life research. Once you have clarity, you have a purpose and can use your adversity for your goals greater than your health. Setting goals and becoming involved with helping others was a significant tool for me to create a positive outlook for the future.

I took my health challenges and became extremely motivated. I challenge you to do the same and set goals for yourself and find a way to serve others. I decided to turn my passions towards art and found new joy in helping others with disabilities. Art is a powerful communication tool.

While still in high school, I applied this revelation. I started working with same age, special education students through an integrated art program within my high school. I also began teaching art at a local “dayhab” for adults with disabilities. I also taught classes in special education summer school with a group of rowdy preschoolers. This was how I chose to serve others because I enjoyed it so much. You should find something you love and use it in a way to help others. Helping others is very rewarding.

Now, as a sophomore in college, I am studying art education with an interest in art therapy. I have facilitated a relationship between my school’s art department and local members of the community who are unable to attend college because of physical or intellectual disabilities.

You will do great things, and your diagnosis in no way defines you. Everyday we face extreme challenges from our health, but these are just a constant reminder to rely on faith and to prioritize what truly matters in life. Our stories are not of pity or illness but instead are of power, change, and love of others. Faith and love became my biggest factors in not only accepting my conditions but becoming who I am today.

Love,
A Sick 20-Year-Old

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