Teens, Hypermobility, and Intimacy

I decided to write this post because there is so little out there for hypermobile teens who find being sexually active either painful or frightening.  Volume III of the “JointSmart Child” series hasn’t been written yet; I  have been too busy with other projects, personal and professional.  Volumes I and II are available on  Amazon and  Your Therapy Source .  But I decided that this topic can’t wait until I get around to writing that book.  It is too important for hypermobile teens.  Other than building their friendships, academics, and sports, sex is something that is ALWAYS on the mind of an adolescent.  And for good reason.  It is biology combined with psychology.  It is normal.

Fueled by reproductive hormones and gradually developing social/emotional maturity, hypermobile teens are like any other teen.

Except when they are not.

Hypermobility places them at risk for injury with any physical activity, and sex is no exception.  The risk is amplified by the neurobiology of arousal.  As adults, we already know that our brains dampen down some physical sensations and amplify others during sex.  Teens do not know this.  They won’t feel the strain on their ligaments and other tissues until things settle down.  This is too late to prevent injury.

Injuries acquired during sex have a serious emotional component.  It makes the pleasure and the pain connected in ways that are difficult to uncouple, and could create either fear or aversion at just the time when sexual exploration is beginning.

The book, “Easy For You to Say” is an excellent resource, Book Review From an OTR: Easy For You To Say Q and A’s for Teens Living with Chronic Illness or Disability , but it might not get into the hands of a hypermobile teen for a very simple reason: the hypermobile teen doesn’t always identify as disabled.  They may have been told that they are uncoordinated, they know that they have more frequent pain and injury than their peers, but they haven’t yet been diagnosed as having HSD or EDS, or seen a healthcare provider than can thread the needle to help them live (and thrive!) with hypermobility.  Physicians aren’t always helpful in this endeavor.  Dr. Brad Tinkle treats people with hEDS, but the “chapter” on hEDS and intimacy in his book is laughable.  Until your heart breaks for all of the people with hEDS who need practical ideas and an understanding of how their feelings about being intimate have been affected by their syndrome.  Then nobody is laughing.  A couple of paragraphs on something so important?  I simply cannot understand that.

For an occupational therapist that has experience in adult rehab, suggesting adaptations for intimacy should not be difficult.  But to work with teens, understanding their developmental stage can be the most important part of treatment.  Adults with acquired disability may have had time to develop awareness of their sexual preferences and needs.  Teens may not.  Adults are often willing to discuss sexuality, and may have a partner they can bring into the conversation.  Not all teens have explored partnered sex, and some haven’t explored masturbation or the use of sex toys.  They don’t have a layer of experience to scaffold adaptations on.  Everything is new, everything is a mystery, and everything has far more questions than answers.

This takes some skill and sensitivity, and if a pediatric therapist has no adult rehab experience, or a therapist only used to treating adults gets a teen patient, this could go poorly from the start.

Both sides will have a lot to learn.  OTs have so much to offer the hypermobile teen.  My upcoming book will NOT ignore hypermobility and intimacy.  I couldn’t do that to my readers!

In the meantime, you may want to read Can You Prevent Pelvic Floor Issues in A Hypermobile Child? , Why Your Kid With hEDS Doesn’t Seem to Know They Need the Potty…Right Now!  , and Should Your Hypermobile Child Play Sports? to learn more about how to help a hypermobile teen navigate through life!



By Cathy Collyer

I am a licensed occupational therapist, licensed massage therapist, and certified CBT-i sleep coach in private practice in the NYC area. I have over 25 years of professional experience in adult and pediatric treatment. It has been a joy to help people of all ages improve their ability to grow and thrive! Occupational therapists are focused on enhancing a client's functioning in everyday life. We are practical healthcare providers, interested in teaching, adapting actions and environments, and building a client's useful skills for living their best life, regardless of their challenges. I am the author of five books, including "Staying In The Room: Managing Medical And Dental Care When You Have DID" and "The Practical Guide To Toilet Training the Autistic Child". I lecture on many subjects, including sleep, trauma, and development. Contact me to learn more about how I can help you achieve YOUR goals!

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