Creative Expression as a Coping Tool
“I feel left out because I can’t participate in most of the activities that others can. I feel as if most people would think I was a freak. I don’t share my emotions easily so nobody knows how I feel.”
“Art was my passion; it’s who I was. Then, in a heartbeat, everything changed. I found out I was in the ‘severe’ stage of PH and was ‘knocking on death’s door.’ When I first got out of the hospital, I lost everything, including my desire to do so much as pick up a pencil.”
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How Has Life Changed
It is not easy to be a teenager: Your body is changing, you are learning to be your own person independent from your parents, you might be feeling the tug of peer pressure and you probably have a million things on your mind. If you have a chronic illness like pulmonary hypertension, you may feel fear and anxiety when the needs of your illness intrude on all the other things you are trying to juggle in your teen years.
So, what challenges do you face as a teen with PH? Independence is a big one. You are learning to be your own person separate from your parents, but you still need to rely on them for help in managing your disease, and sometimes your parents might be afraid to let you be too independent because they want to protect you and take care of you. Parents of teenagers with a chronic illness often find it harder than other parents to let their children be independent, and this can feel frustrating.
Fitting in with other teenagers can also present many challenges. You feel different: You might not be able to play sports, you might have to wear a pump, you may have lots of medication to take, and you may have to miss school or plan activities around doctor’s appointments. Trying to fit in with other teenagers who do not face the same obstacles can add a lot of pressure to your life.
You can probably think of lots of other things that are difficult about your life as a teen with PH, and they can all add up to stress. The signs of stress can look different in everyone. Some people get irritable or moody, others get stomachaches or headaches. Lots of people feel sad or depressed, and when you are stressed, it can be difficult to sleep at night.
Sometimes stress can be good and encourage us to get something done (like when we’re stressed out about a school assignment, so we pay extra close attention to it and work really hard to complete it). Stress is an emotion we may feel when our bodies are responding to different demands in our lives. It’s our body’s way of rising to a challenge and preparing to meet that tough situation with focus, strength, stamina and heightened alertness. A little of this type of stress can help keep you on your toes. You are ready to meet whatever challenge comes, and then afterwards, your nervous system quickly returns to normal and you can relax.
Other times, stress can be really bad for us. Long-term stressful situations – like situations where you are constantly dealing with the demands of a chronic illness – can produce a lasting, low-level stress that's hard on you and your body. Your nervous system remains on high alert, and you can’t relax.
Since our bodies are not meant to be on high alert all the time, we need to find ways to deal with the stress and relax. What can we do?
Moving Forward: Finding Ways to Relax through Creative Expression
Think of stress as a boiling pot on a hot stove. The steam is building up, and you need to find a way to release the steam before the water boils over or the pot explodes. That’s what we need to do with stress – find a way to release it before we find ourselves with a stress overload. Keep in mind that sometimes we do need to look to others like our parents or our doctors to help us deal with stress. If you are about to boil over or explode with too much stress, you might need to ask for help.
At other times, however, we can deal with stress on our own. Many teenagers in the PH community turn to creative activities to help them blow off steam and clear their minds. You can listen to or create music, journal and write about your feelings, meditate, create artwork or write poetry. You can be as creative as you want to be! Studies show that any type of creative expression can improve your physical, mental and emotional well-being by helping you to relax. When you engage in calming activities, you trigger your body’s relaxation response; it’s your body’s opposite of stress, and it creates a sense of well-being and calm.
Here are some examples of creative techniques that you can use to help you get started and trigger your body’s relaxation response:
Music: Music can be therapeutic and stress relieving, whether you listen to it or create it yourself. Jack, age 15, loved to play baseball, but when he received his PH diagnosis in 2009, he had to give up the sport. “I thought my whole life was over,” Jack says. “I thought I was really restricted.” Instead of focusing on what he could not do, Jack discovered music and began taking guitar lessons. He wrote his first song and uploaded it to YouTube in May 2011. “I was surprised how easy it was to express myself through lyrics,” he says. “It was pretty easy to come up with lines.” The song, “You Are My Everything,” became a hit, and Jack was asked to perform it live in November 2011 in New York City alongside hip hop artist Proclaim.
Journaling and writing: Becca, age 19, finds writing to be a therapeutic form of expression. She says, “I want to take my feelings and gift for the written word and transform lives and bring awareness to this disease.” Through her writing, she has even found ways to educate her classmates about PH and the way she feels as a patient: “For English class we had to write a poem about food. I chose my favorite place to eat, which is KFC. Since I am on a low salt diet because of my PH, I decided that it would have a lot of emotion behind it, along with the memories of when I used to be able to eat it.” Becca writes regularly on her blog, My Life as a Chronically Ill Teen.
Artwork: Expressing yourself through art – such as painting, drawing sculpting – can give you an outlet for feelings that you just cannot put into words. Katie has always been an artist. When she received her PH diagnosis at age 19, she discovered that art could also be therapeutic for her: “Art has a way of freeing the spirit and bringing peace and tranquility to the soul. It is a non-judgmental form of expression. It accesses the parts of our brain that feel but cannot use words. Everyone can experience the amazing healing qualities that come from making art, whether you consider yourself an artist or not.”
“Human Spirit” by Katie Tobias
Cartoons: Nicole, age 17, created a cartoon character named Alfie to help her deal with her PH. She says, “My message to all is that even though you’re sick, that doesn’t mean you can’t do anything. It doesn’t mean that you have to isolate yourself. It doesn’t mean that you are a freak. It doesn’t mean you have to give up. When I feel alone, I think of those others who have chronic illnesses, and I feel better knowing that they know how I feel and that gives me hope.”
Nicole created the character of Alfie to help her express her feelings about having PH.
Photography: Julie, age 15, has been living with PH for four years. She enjoys taking pictures and finds photography to be both relaxing and therapeutic: “By doing photography, I forget about PH and the difficulties of life, and I focus on what's in front of the lens. I'm capable of pausing time and capturing the wonders of the world.”
Otter, photographed by Julie
Meditation: While meditation is not an outward form of creativity in the same way as the previous examples, meditation can help calm your mind and allow you to refocus your energy to tap into your creative side. Try to make meditation part of your daily routine (like washing your hair or brushing your teeth). Sit quietly for a few minutes each day. Take deep breaths and try to clear your mind. If thoughts come into your mind, that’s okay. Acknowledge them, and then send the thoughts back out again. If music helps you, turn on some quiet, soothing tunes as you meditate. Sometimes, when you are first learning to meditate, it might be helpful to follow along with a meditation recording. Your local library may have meditation recordings.
These are just a few of the many ways you can use creative outlets to express yourself and relieve stress. There’s no wrong way to be creative. As long as you are enjoying the experience and feeling more relaxed, you are doing it the right way. What types of creative activities do you participate in? Join the conversation by searching for "PHA Teens" on Facebook.
PHA is grateful to the teens who shared their experiences and artwork to make this resource possible. PH medical review by Mike Hayes, RN, BSN, CCRN, Pulmonary Clinical Nurse Coordinator at Intermountain Medical Center in Murray, Utah.
To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: June 2012