CAH and Me
What It’s Like Being A Teen With CAH
by Jennifer Kilmartin
Jennifer Kilmartin is 17 years old, a resident of Calgary, Alberta, Canada, and was diagnosed with CAH at birth. She agreed to answer a few questions and give us her take on the issues people with CAH face as they enter adolescence and look forward to adulthood. Of course, everyone’s experience will be different, but her views may get you thinking about what to expect as your child with CAH grows up and begins to take responsibility for his or her own health. The proper perspective is key: As Jennifer says, “Live by the rule that CAH doesn’t define who you are or what you will become in the future; CAH is only a small fraction of what you have to deal with.”
“How does CAH affect your life right now?”
Being a teenager with CAH doesn’t affect every aspect of my life, for CAH does not define who I am. I am still like any other teenager you come across and can do pretty much anything that any other teenager can do.
Still, injuries are still out there for me, meaning that when I play sports I need to be more careful than someone else, since I, as well as any other CAH person, react differently to any kind of injury.
Through childhood to adolescence having CAH can be very hard emotionally and mentally – especially for a teenager. With any disease/condition anyone will feel different or perhaps out of place. That is normal – at least it was for me. As your child gets older they will gain more responsibility for taking medication, watching out for signs of an adrenal crisis, and many other responsibilities that will come into place as they get older. As a child, my mum would administer my medication – but now that I am 17 years old I have to remember to take my medication three times a day. Some parents may ask when they should start to let their children be responsible for their medication. Good question: for me, I was in about grade two or three when I started to do things on my own. It will vary among children – as some develop quicker than others in maturity.
Sometimes I would forget to take a dose in one day, but that only happened every so often and didn’t become a threat to my well-being. If I missed a dose, I would usually just take it at the most convenient time. As I stated before, I take medication three times a day, which means that, yes, I do take my medication while in school. Many people say that I am being really brave to show that I have to take medication – but really, I wasn’t always that brave. I used to skip out on my medication at school because I didn’t want anyone to know.
It can sometimes be hard for a parent to let their children take responsibility because than they never know if they are taking the medication and they don’t have as much control. But all people must learn to be responsible at some point in their life. Parents, start training your children to be responsible while they are young!
“In what ways might having CAH enhance your life?”
Having CAH might enhance my life in my not complaining about it because I could have been born with something worse. Being a CAH teenager has gotten me curious about other diseases/conditions and has got me into researching and trying to understand what other people go through. In my spare time I sit down and study different diseases/conditions in the world because I want more people to know and understand what CAH is – so in return I want to know and understand what other people go through.
Being affected by CAH has also given me the opportunity to share my knowledge with others who show interest in what I have and how it affects me. Although not everyone understands, they can continue to learn and share with others.
“What are your worries and fears for the future?”
My worries and fears for the future are mainly just the curiosity about whether or not my children will be affected by this same disease that I have and have to go through the same thing I go through now, with CAH. I also worry that that having CAH will interfere with my profession of choice, which is being part of the Calgary EMS. I start my training summer of 2005 for the EMR/EMT testing – will CAH affect my results in the tests that I have to take? I worry about what my future husband will say when he finds out I have CAH, will he stay with me or will he leave me. How will my children react? Those are all my fears, they may change as the years go by – and not everyone’s fears are the same. Talk with your children about their worries and fears for the future!
“Is body image a concern for you?”
Being a female, body image is always a concern. Being a female with CAH is a different story and sometimes brings out the worst. I was on prednisone for about two years and I gained a lot of weight and became very chubby. I wasn’t too happy about that, to say the least. Just a few months ago, I was switched over to hydrocortisone (Cortef® ) and it has brought me a long way. I have lost some weight, I look a lot healthier, and I also feel a lot better and am happy with myself. The Cortef has helped me emotionally and mentally in life.
All in all, body image is just a small portion of life – it doesn’t at all define who you are or who you will become. If your daughter is concerned that she will never get a boyfriend because of the way she looks – well, to say the least, she will find a guy (or a guy will find her) who likes her for who she is and not what she looks like. Live by the rule that CAH doesn’t define who you are or what you will become in the future; CAH is only a small fraction of what you have to deal with.
“How does it affect interactions with others – friendships and dating?”
It is always tough when it comes to interacting with others, but I know that I can do anything that my friends can – and if I can’t do it, no big deal. When people ask what my medic-alert bracelet is for – I don’t really want to tell them because I am afraid, but they asked and I feel they deserve an answer. Some people treat me differently but others don’t put a label on me and they just continue the friendship we started with in the beginning.
Jennifer Kilmartin is a student in Calgary, Alberta, Canada
CARES Teen Chat Group
Hi, my name is Amanda Wells. I have salt-wasting CAH. I am 13 years old. My parents thought it would be a great idea to make a group for teens with CAH so they can talk about feelings, questions, and life experiences with CAH. They spoke with Kelly Leight from CARES and she agreed. I volunteered to set this up.
To join, go to http://health.groups.yahoo.com/group/caresteenchat/ and click on "Join This Group." I hope you are all as interested as I am and I hope to speak with you in the group.
