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.
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/