When a teenager or pre-teen is diagnosed with lupus, the physical and emotional effects can be earth-shattering. Navigating the puberty years is a rollercoaster in and of itself, but add to that a chronic illness that causes severe pain and fatigue, and it can make teens and pre-teens feel extremely isolated. Not to mention the feelings of uncertainty and fear about their future. I know first hand, because it happened to me.
I was first diagnosed with lupus when I was in the 6th grade, at the ripe old age of eleven. I was an extremely active, social and “normal” pre-teen. I went from going to dance class every night, to not being able to walk. I was ripped out of school and all of my extracurricular activities. My circle of friends went on living their lives and I was catapulted into the hospital world. Instead of school teachers, I had doctors and specialists. Instead of social events, I had hospitalizations and clinic visits. Instead of cool clothes, I had hospital gowns and IVs. It rocked my world. And I am sure, if you are a teen or a parent of a teen who has just been diagnosed, it is rocking your world too.
So…how do you deal?
The first step is to know you are not alone. Here, at Kaleidoscope Fighting Lupus, we hear from many people who are diagnosed as teenagers. So we have compiled a list of some common questions and answers to help you, and those having to navigate this illness with you, as well. Back to top
What are the facts?
- Based on the fact sheet from the Lupus Research Institute, about 20 percent of the 1.5 million Americans living with systemic lupus are children or adolescents. Research has found that it mainly affects adolescent girls.
- It is more likely to occur in Latinos, African Americans, Asian Americans, and Native Americans.
- Unfortunately, the onset tends to be more severe and more serious at first in adolescents and children than in adults.
- It is not contagious. You cannot catch lupus by coughing, kissing another person or through sexual contact.
- Less than 5% of people with lupus will have children with lupus. So, if you are someone who wants a to have kids in the future, just because you have lupus doesn’t mean your children will. You don’t have to be afraid.
- Currently, there is no cure, but doctors are working hard to change that. In 2006, the Michael Jon Barlin Pediatric Research Program was founded. It became the first and only lupus advocacy organization in the United States with an agenda dedicated solely to childhood lupus research. Additionally, Cincinnati Children’s Hospital and Boston Children’s Hospital have several research studies currently accepting patients for adolescent research. For a full list of studies around the world click here: https://www.clinicaltrials.gov/ct2/search
- Organ involvement and arthritis-like symptoms seem to be the top occurring symptoms and are seen in 90 percent of those who develop lupus as pre-teens or adolescents.
- Over 50 years ago, children and teenagers with lupus had about a 30 to 40 percent survival rate. Thankfully today, there are many new and powerful medications, early and aggressive therapies and lifestyle changes that can control lupus symptoms and allow the majority of children to lead normal and long lives.
How to Deal with Depression & Anxiety
When I was a teenager, I remember distinctly feeling like my lupus was a burden to my friends and family. It made me incredibly sad and my self-worth hit an all time low. Feelings of sadness, worry, worthlessness, anxiety and hopelessness are normal feelings to have in the beginning. However, when those feelings become all-consuming and you can’t sleep, can’t eat (or overeat) and are sleeping all day, it’s time to talk about your feelings with a professional counselor. The important part to remember is that you are not alone, and talking with someone can help you work through these challenging feelings and help you see past your pain and refocus. Back to top
How to Deal with Worry About the Future
It is important to remember that you are unique. No two lupus patients are the same. What happened to another person may not happen to you. Worrying about the future only sucks the joy out of today. After a lupus diagnosis, it is not only important but imperative to still make plans and have something to look forward too. And parents, the best advice is to (whenever possible) create a normal life for your teenager living with lupus. Something as simple as getting froyo after a doctor’s appointment or getting your nails done with friends after a hard treatment can help maintain a sense of normalcy. Back to top
How to Deal with Social Activities
Sometimes changes with your social calendar are inevitable. But instead of making a list of all the things you canNOT do, make a list of all the things you still CAN do. Swimming, book clubs, yearbook and debate class, are some ideas. When you have a chronic illness, it is important to stay active. This is a bump in the road, but it is not the end of the road. And you are still you, you are still of value and you still have something to offer to the world – even if you cannot attend dance class 5 nights a week (like in my case). Back to top
How to Deal with Explaining Lupus to Your Friends
I want to be real with you. You will have some friends who get it and some that won’t. You will have friends who are scared and don’t know what to say, and friends who will pretend that nothing has changed. You may be surprised who shows up at the hospital every day and goes with you to your treatments. It may not be the person who you thought it would be. People are surprising…especially teenagers. The best tip is to not resent those that don’t show up because this is scary for them too. Try to ease your friends into your lupus diagnosis by being as open and honest as you can with them. They are not mind-readers, they are not health experts (even if they Google lupus) and they don’t know what to expect. So keep your close friends in the loop. Be clear with what they can expect and what you hope to expect from them. Words like, “Hey, I really want to go to the game today. But do you mind if we sit in the shade so I don’t feel sick later?” Or “I have to go to the doctors after school, want to go with me and then we can hit the books?” may help keep them aware of the situation, but, also remind them that you are still you. Back to top
How to Deal with Your Parents or Guardian
This may be the most challenging aspect of being a teenager with lupus. How do you begin to assert your independence when your health makes you dependant on your gaurdian? Your parents or guardian are responsible for your well being, and because of that, they might tend to be a tad over-protective during times when your disease is active. They are going through these changes too, and it is just as scary and new to them as it is to you. So, just like you need to be honest with your friends, you need to be honest with your parents. TIP: It is always more productive to talk through how you are feeling, than letting your emotions get bottled up. Because at the end of the day, it is better to face these new challenges with the support of your family than without it. Back to top
How to Deal with Dating
Talk about making an already complicated teen issue more complicated. Just like with any relationship – honesty is the best policy. It is always best to tell the person you are dating (or want to date) about your lupus. Your lupus does not define you, but it is a part of you. So let him or her get to know the real you by not keeping your lupus a secret. Explain your illness to him or her the best way you can and be open to answering his or her questions. Remember, authenticity and vulnerability are attractive traits…so show them. Back to top
Check out This podcast from Genesis, a teenager with lupus:
From: Genesis Be’s show
National Mental Health Association Hotline & Crisis Call Center: 800-273-TALK (8255)
The Charla De Lupus Program: 866-812-4494
Suicide Prevention: 800-SUICIDE (784-2433)
Kaufman, M. (1995). Easy for You to Say: Q & A’s for Teens Living with Chronic Illness or Disability, Toronto: Key Porter Books
Lehman, J.T. (2004). It’s Not Just Growing Pains. New York, NY. Oxford University Press, Inc.
Sources: lupus.org/research/pediatric-lupus-research-program, cincinnatichildrens.org/service/c/clinical-trials/search-studies/lupus, childrenshospital.org/conditions-and-treatments/conditions/pediatric-lupus-systemic-lupus-erythmatosus, childrenshospital.org/research-and-innovation/research/clinical/clinical-trials, hss.edu/CharladeLupus-our-services
*All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at firstname.lastname@example.org for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. **All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.