Thriving with EDS #1: Listen, Be Aware, Be Mindful

Thriving with EDS


Welcome to my helpful tips and suggestions on thriving with EDS. Thriving sounds so much better than surviving, right? Please take what you like and leave the rest. May some of this be just what you need.


Tip #1: Listen to Your Body


To thrive with Ehler’s Danlos Syndrome (EDS), I learned to listen to my body’s messages. Ignoring my body led to many unnecessary injuries, dislocations, strains, tears, handicaps, and permanent physical problems (that might have been otherwise avoided). After learning this valuable lesson the hard way, I decided to adopt a new mantra, “I listen to my body.” “I listen to my body.” “I honor and listen to my body.”


So no matter what others may have suggested as solutions for me, it always came down to my own inner wisdom. My body always had the final say, anyway. If it couldn’t do something, it just simply couldn’t do it. No one could argue with the truth. To avoid the consequences of not listening to my body, I learned to listen – intently! So, start listening to yours. Your body does have innate intelligence. Once you learn to listen, then you have to honor what you hear. (FYI: Most likely, you will hear pain.)


Lesson #1: Pain is a Message!


Tip #2: Increase your Awareness


I learned to appreciate pain as a messenger. It turned out that pain was not my enemy, it was my friend with a message. I learned to thank my pain for telling me that something was amiss. Fearing and loathing pain just kept me anxious and running from my own body. I would rush to the medicine cabinet to “shut it up” not realizing that the pain was a flag, a warning, a sign. Now, when I feel pain, I loving listen.


Listen with love to the pain, learn to sit with it before medicating it immediately to “shut it up.” What is it trying to tell you? Is there a joint out of place? Are you weak in the legs and need to adopt a strengthening program? Have you not moved in a few days and things started to compress? Where is the pain coming from? Ask your pain questions. It is important to know what it is trying to tell you. Pain is a signal to be aware of something happening in the body. Get as many specifics as you can. Go for the details. Sometimes the answers and solutions come from the little things. Honor the message of pain. Increase your awareness by diving into what the pain is saying vs. trying to avoid it. With awareness, you can take appropriate action, even if the action is resting and doing nothing. Avoiding pain with EDS is dangerous. Quite frankly, not possible. This doesn’t just apply to EDSers, it’s for every human body – just more so us and others like us. So, make peace with pain. And gain awareness to practice self-preservation, self-protection, and self-partnering.

(Basically, get really good at noticing things. Then, you will get good at connecting the dots.)


Tip #3 – Practice Mindfulness


With EDS, you will have to be mindful of your movements to avoid injuring yourself. Mindfulness can extend to eating, activities, people, chosen careers, and every other choice in life. If you are mindful of when you need to rest, move, avoid certain foods, then you can care for yourself in a better way and suffer less. Perhaps, you could begin a food log. You could be mindful of how your shower and if you tip your head back too far. You could be mindful of your posture sitting and if you slump and slough while you drive. You could begin to be mindful if you are trying to do too much. You could extend mindfulness into every area of your life to bring your awareness to what you are doing as a habit, inadvertently, or subconsciously. The dangers of not being mindful are great. For example, overeating leads to extra weight on the joints, isolating and staying in bed can lead to depression, certain foods could lead to horrible intestinal reactions, pushing yourself too hard at the gym or PT can lead to injury and embarrassing ER visits.


Practice mindfulness to be aware of what you are doing. Again, if you are not aware then you cannot make better decisions for your body. Start with becoming aware. Stop and say several times a day, “I am aware.” And bring your awareness to what you are doing. How are you sitting, standing? What are you eating? What is your day structured like? Is it helpful for your condition? Have you reached out for support for any overwhelming feelings you are having? Are you avoiding certain responsibilities to your health? Is there a slight pain somewhere in your body? I always listen to the smallest signals of pain, for that is where I have the greatest opportunity to change course and keep myself healthy and happy.



Listen to your body. Embrace pain as a messenger. Become more aware. Practice mindfulness in everything you do. Ask your body questions. Listen. Then, honor yourself.


Suggested Mantras:

Try saying these out loud:


“I listen to my body.”

“I honor and listen to my body.”

“Thank you pain for telling me about that.”

“I am aware.”


Suggested Prayer:

Use the serenity prayer as often as needed. While we may not be able to change our DNA or condition, we can change our thoughts about it and attitude. We may even find a few practical things we can change when we have some serenity.


“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and wisdom to know the difference.”



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