Living with Ehlers-Danlos

May is Ehlers-Danlos Awareness Month, so I wanted to share more about my life with Ehlers-Danlos syndrome (EDS). While everyone’s journey is different, this is how EDS impacts me personally. 

I have joint weakness and instability. This causes me to dislocate and sublux not only major joints, but also smaller joints such as my fingers and toes and joint spaces in my spine.

Because my connective tissue is very weak, this puts added strain on my bones in areas where tendons and ligaments would usually take more of the weight. This strain means I’ve experienced many broken bones in my feet and lower legs just from running, walking, and wearing the wrong shoes.

I really struggle with neck pain. The skull and brain are quite heavy, and holding them up with a weakened spine and occipital joints can cause pain in my head, neck and upper back. Unfortunately for me, it’s not as easy as just strengthening the muscles in those areas (although that can benefit some people). It’s actually a structural issue that often requires bracing, kinesio tape, and frequent massages.

My organs are also majorly affected. The visceral fascia that holds the organs in their place is a double layer but it’s thin. This is a very important connective tissue that can really cause problems if it is not strong enough to do its job. I have had three organs removed and I have had to have “fixes” on several other organs to hold them in place. In my future, I’ll have to do many more repairs to help keep my organs safe and healthy and make sure they are receiving enough blood flow.

I wear a double wedding ring on my left hand that keeps my ring finger from dislocating when I drive or push a grocery cart. If I’ll be holding or carrying things for any amount of time, I have to use a wrist brace. I cannot wear a backpack and it is very hard for me to carry a purse while shopping or walking around.

I have a fabulous doctor who can put my joints back in place, and have also been trained by physical therapists, so I am able to get most of my small joints back in place myself. My husband also helps me get my fingers back in place when they dislocate while I’m cooking or working around the house.  

Life with EDS means I have to be very careful and proactive with my body to avoid getting injuries. I dislocate joints often, so sometimes people assume it must not hurt. In reality, it still has the same pain and recovery time experienced by anyone with a dislocated wrist, finger, or hip. 

My mom is an occupational therapist and has me all set up with a shower chair, a walker, and has taught me safe ways to carry and hold things. As well, my daughter has gone to physical therapy since she was four months old for EDS, so I have been trained extensively on proper body mechanics and tools to use to protect my joints.  Most importantly, I am encouraged by all of my loved ones to ask for help when I need it. It’s not an easy journey, but I am thankful for all this support that helps me navigate the ups and downs of each and every day.

Are you also living with chronic illness or looking to support a loved one? I have a Pinterest board where I share tips, resources and information I find. Follow it here!

There are also so many products I use to help make my life easier and more comfortable as I deal with some of the issues around chronic illness. If you or a loved one is experiencing chronic illness, I hope you find some of these useful as well! You can find some of my favorite products on my Amazon store.

One Comment

  1. Alexis, I was so glad to read about your experience with EDS. My 19 year old granddaughter has had this disease for at least 3-4 years but only properly diagnosed within the past 9 months. She bruises so easily and her joints are affected. She has gastroparesis- also caused from EDS. Her bladder has quit working 3 times. She has tachycardia and has starting taking allergy shots. I worry so much about her quality of life. You said you have had 3 organs removed. Do you mind me asking which organs? Thanks for listening. Would love to hear from you and others with this disease.

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