Teens can find living in a bendy body especially perplexing. While their peers (seemingly) go about fun, effortless lives, zebra teens can find everyday tasks to be quite challenging. Just when you think you have figured your body out, something new pops up (or pops out) that you must overcome. It can be one heartbreak after another.
The teen years can be tough for any teen (and their parents). Zebra teens may experience the same health and mental issues that "regular" teens face but have even more difficulty if they are already struggling with symptoms related to a hypermobility disorder.
These may include:
Suboptimal nutrition
Weight and body image
Drug, alcohol, and tobacco use
Physical activity
Safety
Stress, anxiety and depression
Sexual behavior and orientation
Personal relationships and conflict resolution
General health including hormonal changes
Navigating the teen years AND chronic illness is NOT for wimps!
This blog post is inspired by the below email I recently received from a concerned mom.
"Hello,
Thanks so much for your podcast! I wondered if you could point me towards some content (book or audio) that is directed towards tweens/teens with bendy bodies. I have a just turned 12yo who in the past year went from a driven, high achieving academic and cross country runner, to a child in so much pain he wants to do nothing but lie in bed. Just playing with his cousins for an hour can leave him in bed the next day, and he really misses running. :(
I am hoping to find some voices aside from my own, that can speak to him of hope, and possibilities, and what progress can look like. Honestly his world just fell apart so fast that he is feeling totally hopeless that anything can help.
Thanks for anything you can suggest! And maybe it’s something you could address on your podcast too?!"
Thank you so much to this mom for sending in this question!
As parents you want to know the following:
How can I best help their child?
How can my child develop resilience and best cope with their medical condition(s)?
Can my child lead a "normal" life?
Are there things I should avoid doing?
Will my child's health ever get better?
These are all great questions:
How can I best help my child?
How you interact with your child greatly influences outcomes. In general, staying cam and supportive without smothering is best. If your child doesn't feel well, it can be difficult to know when to provide a gentle nudge and when to back off. But having meaning and purpose in life is important. Children, teens, and adults all need to feel needed. So encourage your child to participate in chores as they are able so they still feel a valued member of the household.
Arm yourself with information and advocate for your child at medical visits. Be organized in order to get the most out of each encounter. It is best to have a one or two page summary of the most significant problems facing your child. List the most pertinent diagnoses (or suspected diagnoses) and pertinent positive / negative test results. Here is one resource to help with this.
How can my child develop resilience and best cope with their medical condition(s)?
Each child is unique so no two children will have the exact same experience. Even two children with the same diagnoses will be different so it is important to avoid "comparisonitis". Rather than comparing your child with another child, compare your child with themselves. Stress the importance of each of us as individuals being the best that we can be.
Teach your chid about "self talk". We all engage in inner chatter that can be positive or negative. It is very common for us to say negative and hurtful things to ourselves that we would never say to a friend.
When we have been struggling with chronic illness, autonomic negative self talk can really kick into high gear. It can be particularly challenging to shut it down but that is when we need to remember not to "believe everything you hear".
Can my child lead a "normal" life?
Ehlers-Danlos Syndromes (EDS) and hypermobility spectrum disorders (HSD) symptoms can change in a variety of ways over time. They can wax and wane, progressively worsen, or even IMPROVE (usually with lots of hard work and guidance/treatment from a multidisciplinary medical care team).
Setting goals can be very helpful. Goals are most effective when they are "SMART". This helpful guide has been useful for many parents and teens.
Many people are able to function at a very high level and have a good quality of life. Many of my patients say they would not reverse their EDS even if they could. Dealing with chronic illness as a younger person gives a perspective that allows them to serve others in a unique and special way that provides a strong sense of meaning and purpose. Knowing they have overcome such incredible challenges is empowering!
Are there things I should avoid doing?
We can also do things unconsciously that worsen our child's pain and chronic illness experience especially if they have EDS or HSD.
People who are hypermobile have a higher prevalence of anxiety. This can be especially problematic if two or more bendy (and anxious) people are together. As human beings, we unconsciously mirror each other's emotions especially in close relationships. Therefore, one person's anxiety can amplify the anxiety in the other person.
But we can mirror each other's positive emotions as well. Simply being aware of this effect is motivation for parents to check in with their own mood and seek outside help when indicated.
Anxiety is all about the future. Bringing yourself and your child back into the present is calming to the nervous system and reduces pain. This takes LOTS of practice as many of us are Gold Medalists in the "What If?" Games! Practice makes progress though and practicing during the less stressful times will make us more successful when the going really gets tough.
How do you bring yourself back into the present? Refocus your mind on what is happening right now. You may feel as though you are being chased by a tiger but are you really? Become aware of tension in your body and release it. Consider the beliefs you have about the future and ask yourself if they are really true or not. Focus on your breathing. Slowing down your breathing is wonderful for reducing anxiety but requires lots of practice.
Mindfulness Based Stress Reduction was developed by Dr. Jon Kabat-Zinn. More than 25,000 people have competed this evidenced-based training since 1979. The potential benefits are numerous and include improved ability to manage pain and stress. There are also programs specifically designed for teens.
Will my child's health ever get better?
It can. Many teens experience a lessening of symptoms as they become young adults. As children and teens mature, they may develop better coping mechanisms for pain and other problems recognizing sooner when they need to modify their activity. Conditions like POTS (Postural Orthostatic Tachycardia Syndrome) may also improve over time. I also firmly believe that brilliant researchers will continue to deepen their understanding of these conditions and therefore we will have more robust treatment options in the future.
I highly encourage all parents to read the book, Disjointed - Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. Editor, Diana Jovin, was inspired to write this book following her challenging diagnostic (and treatment) odyssey with her daughter. With multiple specialist chapters, including two written by me, many readers will find useful advice and tips from those who have "walked in their shoes".
Dr. Leslie Russek, DPT, PhD, has published extensively on the topic of managing and treating EDS and HSD. I strongly recommend reading her online, free guide: "Self-Care for Kids & Teens with Hypermobility Spectrum Disorder". This detailed resource will be helpful for prioritizing your child's symptoms and finding practical solutions.
The Bendy Bodies podcast episode, "Cultivating Psychological Skills with Bonnie Robson, M.D." is loaded with strategies that can support and encourage long-term mental and physical health. Dr. Robson outlines ways to build several tools for your emotional toolbox, and reminds us that in these times, good enough is a great goal to have. While you are there, don't forget to subscribe to the podcast so you won't miss future episodes.
Another useful resource is Conquering Your Child's Chronic Pain: A Pediatrician's Guide to Reclaiming a Normal Childhood. Pain is a serious problem for a surprisingly high number of children and can interfere with every aspect of their life. Just like with adults, pain is not "just" a medical problem. It impacts mood, sleep, relationships, and ability to attend school (or hold down a job). These things, in turn, affect how pain is processed in the body. Addressing and treating the child's pain in a holistic manner is much more likely to be successful when this complete picture is taken into consideration.
Rather than focusing on avoiding negative emotions, it can be helpful to focus on increasing positive ones. Yale professor Dr. Laurie Santos, has changed the lives of thousands of people through her class "Psychology and the Good Life" and she can change yours too. Her podcast, "the Happiness Lab", is free, entertaining and full of practical tips. Dr. David Burns is another wealth of information with a podcast, blog, and website full of great suggestions for improving your mood.
Conclusions
Parents help their child with EDS or HSD by doing the following:
Stay calm and emotionally neutral
Stick to a normal routine as much as possible
Help redirect the focus onto what the teen is passionate about and enjoys, finding some way to incorporate fun back into the child's life
Demonstrate positive coping skills
Learn and teach your child mindfulness and relaxation techniques
Encourage your child to use social media selectively
Help your child distract themselves
Taking care of a zebra is tough!
Remember to take care of YOURSELF!
You truly must "put your own oxygen mask on first". By watching you practice good self-care and self-compassion, your child will learn to value these practices and have improved chances of improving their quality of life and functional capacity.
Don't wait for your health (or your child's) to get better to take your life back!
Take your life back and your health will get better!
Resources:
Paldeep Atwal, M.D., Richard Barnum, M.D., Linda Bluestein, M.D. et al. Editor: Diana Jovin. Disjointed - Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. 2020. Hidden Stripes Publishing.
https://feelinggood.com
https://www.happinesslab.fm
For more information on POTS, check out Dealing with Dysautonomia.
Have feedback or questions? I'd love to hear from you. Shoot me a message at info@bendybodies.org and let me know how I can help you.