This interview is the fifth in my series on kids with chronic illness. This time I interviewed my friend A’s 14-year-old daughter M who has asthma and was recently diagnosed with celiac disease. At the time of this interview, she was experiencing celiac symptoms, but had not yet received a definitive diagnosis. M’s mother A is a dear friend of mine who has the thyroid disease Hashimoto’s thyroiditis and is admirably devoted to the health and welfare of her two daughters, both of which have chronic illnesses (the next instalment will be my interview with A’s older daughter A).
Sarah: Can you please tell me what illness/illnesses you’ve been diagnosed with and describe its/their symptoms to me?
M: Asthma. When I run, it’s hard for me to breathe. I start coughing, wheezing and then I have to take an inhaler to start breathing normally again.
Recently, I’ve been experiencing frequent stomach aches and I’m going to have to get an endoscopy to determine what’s going on. I don’t really want to do it, but I have to.
Sarah: How has this changed your life?
M: I’m a cheerleading coach and play a lot of sports, so initially it was harder to run and play soccer and basketball. When I was nine, I used to have an asthma attack at every soccer game which made me feel bad as I couldn’t keep running like everyone else. I kept coughing and had to leave the field. Since I have started high school, there is more running practice and I have to try harder to keep up, but it’s easier now that I have my asthma more under control.
Recently, I’ve been suffering from stomach aches which stops me from doing some things and from working. I referee soccer games, but recently I got sick with stomach ache and had to stay home. I also had stomach aches at my friend’s house. My mom gave me digestive enzymes.
Sarah: How have your friends and family reacted to your illness/es?
M: My mom started taking me to a lot of different places for testing and doctors. I didn’t like my first doctor I went to as she didn’t think I had asthma and sent me to get multiple tests.
My friends ask me in sports class where my inhaler is kept in case of emergency. They sometimes joke about it in a nice way. My friend always wants to press the button on the inhaler. If I’m moving slowly on the soccer field, they ask me if my breathing is okay.
My big sister and mom like to tease me by putting various songs on my iPod such as “No Air” by Jordin Sparks, “Harder to Breathe” by Maroon 5, “Just Breathe” by Anna Nalick and “Breathe” by Faith Hill.
Mom A’s philosophy is: “If you are going to be stuck like this, you have to find humor to deal with it. When M was younger, asthma attacks led to panic and crying. We were at a soccer game and M was explaining she had an asthma attack. One parent in another team said M was complaining although she had gotten elbowed in the chest. M’s dad angrily exclaimed: “She has asthma!” He also has asthma. M’s parents also tell her stories about people with uncontrolled severe asthma who died – not to scare her, but to drum into her the need to take her inhaler as she is not always compliant.
Sarah: How has this affected things at school?
M: I have to take my inhaler before gym and sports.
I missed school due to severe tummy aches. When I walked, it felt like I had to throw up so I lay down all day. Sometimes my dog Trixie and my cat Oreo will curl up with me when I am sick. My sister Alyssa bounces on my bed as payback for me throwing the dog at her to wake her up.
Sarah: Has anything positive come out of this?
M: I’ve learned to be more somewhat more responsible. I try harder in sports because I felt like I needed to catch up so that I could play with everyone else. I got the highest fitness award along with nine other people in my grade.
Due to my tummy aches, I now understand what my friends are going through with their food allergies.
Sarah: What has this experience taught you?
M: Everyone has their own limitations due to illnesses, etc. and it’s sometimes hard for others to overcome that. My advice is: keep trying hard so that you can find something that helps you overcome these limitations. What helped me is my ambition and desire to compete and try out different things, as well as knowing that there are a lot of others who don’t give up so easily. Everyone else is still running and working hard so I should be able to as well.
Sarah: If you could change anything about the way society deals with chronic illness in minors, what would that be?
M: For other people to be more understanding as some people complain when I get hit during soccer and have an asthma attack. They should know more and not be so ignorant about it. I would like people to realise how many people in the world have chronic illnesses, especially minors. People shouldn’t judge people for getting hurt or injured and being unable to carry on.
Sarah: Would you be interested in being put in touch with others in your situation?
M: Yes.
Sarah: Thank you very much for your participation and for helping to raise awareness for others in your situation.
