Caution: EDS – Handle With Care

Caution: EDS – Handle With Care

By Ellen Lenox Smith.

There is nothing sweeter than to bump into an old friend and want to be wrapped into embrace with them, but with EDS, this type of loving act can have unintended yet painful consequences. If you know someone dealing with Ehlers-Danlos Syndrome, then please take a moment to understand why a simple kind gesture of hugging and touching of their body can have a terrible consequence. This does not mean you cannot demonstrate affection to those afflicted with EDS, it just means that you must be creative in your approach. The worst thing you can do is to not express your feelings to an individual, often in need of any emotional gesture you have to offer.

Ellen Lenox Smith

EDS is a condition one is born with and means that those afflicted with this condition have defective collagen, the glue that holds the body together. This means the person has ineffective ligaments and tendons, so their bones can slip out of position with simple movements such as hugging and touching. The muscles of EDS patients are thus required to take over the job of the ligaments and tendons, along with their own critical job. So, the muscles are on overload. When pressure is then put onto the EDS body, bones can shift out of position. Although we are referring to just millimeters of movement, the result becomes terribly painful. Thus, the briefest of physical contact may result in days of unnecessary pain and a significant setback in an individual’s’ therapeutic treatment program.

As a person living with EDS, I will share a few experiences that have happened to me in an attempt to provide you with insight into how vulnerable those afflicted with EDS are. First, just last night, we had dinner with some dear friends who are very aware of my condition and the journey we have been on dealing with my twenty-four surgeries. However, at the end of the evening, as we were in the process of saying goodbye, I was embraced by them both and one even put their hands around my now fused neck, to initiate a close embrace. I came home, had trouble staying awake for the evening and had a lousy night sleep. That simple gesture caused my neck to slip, the shoulder to sublux (partial dislocation) and the sternum to slip down onto the chest, causing difficulty with normal breathing. The next day was not a good feeling one and I looked forward to getting to manual physical therapy to have them reposition many of my bones which were causing pain and discomfort. My husband and I try to keep me protected but so much social action, particularly with friends, is so spontaneous and rapid that you just don’t always catch the action in time. So, maybe you will help us to stay safer through your actions.

Another time recently, I was sharing how much better I was feeling and in the end of the conversation, the person was so happy to hear this that they wrapped their arms around me and pulled me in for a celebrational hug. That compassionate action caused another poor night of sleep – the chest to shift inwards and unpleasant sensations until manual PT was required to correct it all. Once again, this damaging action all happened so quickly that I just didn’t catch it in time to help prevent the damage.

The hard part is that these expressions of compassion, caring and touching are normal with relationships, but if that person happens to have EDS, the results are not always positive. I have run this over in my mind each time this has happened to me and have had to pay the price, hoping to come up with a plan to try to prevent this from happening again. The underlying problem is that the last thing in the world any of us desire is to give friends the sense that we are rejecting their sincere gestures of affection.

For those living with EDS:

  • If you can catch this action in time, mention that you just can’t be hugged tightly or possibly at all, due to the possibility of subluxations.
  • If it is happening too fast, consider taking your arms and crossing them over your body to protect yourself, for I find reaching up to stop the process is now also causing the damage to happen.
  • Consider instead of leaning into a hug, to extend your hand out to shake and then take your other hand to place over theirs too, to show that extra caring.
  • Consider using this as a teaching opportunity for someone that cares about you and would never want to hurt you.
  • Consider wearing a brace to protect a vulnerable area – sometimes I resort to wearing my neck collar to warn others of my vulnerability, even when I no longer need to wear it.
  • If you are going to a planned social event, develop a plan to address the need to protect yourself. A good plan can be designed to protect you and not offend others.

For those approaching an EDS friend:

  • Consider asking first if it is ok to be touched, and if so, what would be safe.
  • Consider extending your hands out instead of reaching in for that hug.
  • Consider asking them to instigate the movement towards you, whether a hug, pat, or hand shake, to be sure you are not doing anything to hurt them.

Many of us coping with Ehlers-Danlos Syndrome, look so normal to others. Yet, if you ask about our journey, you make be taken aback to hear about what we have to cope with daily. The last thing a friend wants to do is hurt someone, so take this moment to think about how you might safely express friendship, love and compassion safely towards this person. Trust me, your consideration will be greatly appreciated!

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Authored by: Ellen Lenox Smith

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BeckyF

Sadly, for you to post this is further reinforcement the general public does not understand the gravity of seriously suffering chronic pain patients. I can no longer hug my daughter as I would like to, Ellen. She has EDS HM and Classic, POTS. Also has late stage Lyme that went undiagnosed for years and other bacteria from a tick or mosquito bite that a rash was seen but no insect. She nearly died multiple times. She could not spell her name at one point from the Lyme infection, nor was any TV or sound at all allowed to be near her for the early years. Your EDS allowed you to marry, have children. My daughter’s disability started at age 23, is now 32. NO HOPE of a partner, nor children, which she dearly would love to have her own family one day.

Due to the CDC restrictions, my daughter cannot get meds to help her try to do some type of alternative therapy to see if we could maybe get somewhere. As you know, Ellen, EDS folks absorb medicine differently than normal people. An outpatient gall bladder procedure required multiple visits from the anesthesiologist to try to manage her after surgery pain to where her back was not arched in the air, unable to talk, tears running out her eyes.

I am beyond frustrated with the ineptitude of SO MANY people that call themselves medical professionals, or knowledgeable politicians, when they are but without proper knowledge nor care about the people who suffer. It is disgusting, Ellen. It is beyond sad. My Dad of 88 and I cry over my daughter and how badly she suffers, and how her life has been truly lost, and no hope left.

Keep writing. You are one very lucky lady to have had a spouse and children. God Bless.

Lori Guidos

Educational…

I live with chronic pain and yet never thought of this… thanks for sharing and educating us.

George

yes yes, I thought I was alone in this
my family still hugs me 17 years. I can not go to church it’s a huggy church, my mother in law says ware a sign Please no hugging my skin is too sensitive.

I do not have EDS BUT RDS OR CRPS
thank you so much
for your story
George

Sue McManus

My son has EDS. At 14, his best friend caused him months of costochondritis from his ribs from giving him an exuberant hug. Ultimately, causing him a month long hospital stay.
He broke his wrist and needed surgery from a simple scooter fall. It’s astounding how easy it is for him to be badly hurt.

Katie Olmstead

Thank you, Ellen. This is helpful to me as I do have friends with EDS and I am a hugger. I promise to be much more mindful.

Bless your heart Ellen. I live on hugs and love to give them! Although I know if I had a friend in whom they hurt I would definitely not want to hurt them by doing so. I would most certainly want them to tell me that my hugs along with anyone else’s cause serious damage. I wouldn’t want my affection doing damage to their body. After all the hug is supposed to feel good and in a sense healing although if it’s causing the opposite it’s best to tell everyone. If it were me I know it would be hard although I would want them to know. If your friends think enough of you to hug in the first place then they’re going to think enough of you not to hug to hurt you. Perhaps you can start telling everyone you know that hugs simply hurt even though you love them because let’s face it, we all do. Thank you for helping me realize more about EDS. I’ll definitely think twice before I hug someone so tightly the next time, this is just not something someone would normally think of. Thank you for letting us know. ❤