Missing so many days of school you lost count. Feeling isolated from being too sick to attend classes. Hospital. Homebound. Pain, swelling, extreme fatigue. Wheelchair. Coughing up sputum to be measured and evaluated. Chest PT. Insulin injections. Pumps. Stomach cramps and endless trips to the toilet.
Does this remind you of your life growing up? NO? Most of us don’t describe our childhood or adolescence this way. For far too many children and teens, though, this WILL bring back memories of childhood and growing up!
Being diagnosed with a chronic illness is challenging for anyone. However, children and teens with chronic illnesses face unique challenges that most people their age have never even considered.
The term “chronic illness” describes many different diseases and/or symptoms that have no conventional medical cure, and therefore, will be ongoing for the foreseeable future. That’s a lot even for an adult to face and deal with; the realization that you can’t just take a pill or have a procedure and “fix” the problem.
Adolescence is such an uncertain period in life. Hormonal and neurological changes can wreak havoc with any teen as they begin the push-pull of growing up and becoming adults. Teens experience insecurities, issues with impulse control, mood swings, and a variety of conflicting emotions.
The most self-confident 10-year-old can easily become leery and worried about the world around her at age 13. So, it stands to reason, then, that adding the challenges, fears, and expectations of living with a chronic illness can be, and usually is, overwhelming much of the time.
So, how does this affect you?
Have you ever seen someone park in a handicapped parking space, get out of their car, and WALK? Did you think they were just too lazy and how dare they take a spot for someone in a wheelchair?! Do you now or have you ever had a friend who just never seems to be able to go on outings, sleepovers, or field trips because she’s too tired or her parents won’t allow it?
Have you ever heard someone say that they know a person is just making up their “illness” for attention? Or they can’t have ___________ (arthritis, diabetes, fibromyalgia, bowel diseases, etc…) because they’re just too young!
This affects you, because whether you realize it or not, you most likely know someone with a chronic illness and very likely you know a child or teen battling one of these illnesses that you can’t really “see.” That’s why they’re often referred to as “invisible illnesses.”
Unfortunately, we are now learning that the rate of chronic illness in children is increasing dramatically.
How can you help?
There are numerous ways to help change the stigma associated with chronic illness – especially in young people. For one, realize that just because they are YOUNG does not mean they can’t be ill. Furthermore, realize that the disease process in children and adolescents isn’t just a miniature form, but has its own pathology or course.
Young people are affected very differently than adults with chronic illness. Children and teens are more resilient than many adults – you may see someone with juvenile arthritis, for instance, in a wheelchair one week and then see them riding a bike or swimming the next. However, being able to do “normal” activities from time to time does not mean they are well – or cured – it simply means they feel well enough that day or week to do what they enjoy.
One of the best ways you can help, I believe, is to be empathetic. Empathy doesn’t mean sympathy. Feeling pity for children and teens that face life with chronic illness isn’t helpful. However, imagining, to the best of your ability, what it might be like and then responding as you would want someone to respond to you, can be very helpful.
So, imagine not being able to go to sleepovers without your parents because your blood sugar may drop dangerously low during the middle of the night. Imagine everyone in class giving you weird looks, or worse yet, making fun of you for coughing all the time, spending too much time in the bathroom, or because you need medical equipment.
Imagine how many times you’d have to tell someone that they can’t “catch” your illness. Imagine anxiety so severe you can’t make it to school for an extended period and, even when you’re doing better, you’re too afraid to return because of all the questions the other kids will have.
Imagine dating – do you tell them right away? Do you wait? How long?
Imagine wanting to go to your favorite university, but, it seems doubtful because the campus is so big, and you’re not sure you can attend classes enough to make passing grades. Imagine wanting to get married or have children – how do you manage the stress on your body, or allow yourself to marry someone who will be at least part-time caregiver? Imagine losing friends and even family members because THEY just can’t handle it?!
You can help by being considerate.
You can help by not jumping to conclusions and by realizing that just because you can’t “see” it doesn’t mean it’s not real. You can help by teaching your children to be compassionate, to be thoughtful, but also to treat a friend or classmate with a chronic illness the same as anyone else – just realizing that they may not be able to do everything the same way.
You can help by being aware and spreading awareness of the realities of chronic illness in children and teens and becoming educated about the realities of their lives.
Want to know more?
Visit Chronic Connection for support and information regarding teens and young adults with chronic disease.
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Featured image courtesy of Flickr/Laura de Mingo