When You Feel Left Behind With Chronic Illness

I recently could not figure out why I was feeling an even stronger sense of isolation and blue when I have had to live with Ehlers-Danlos syndrome and sarcoidosis for 71 years. And then I heard my voice sharing with my husband, as he was off for the dog walk into the woods, “I wish I could walk there too.”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

That was it; it is winter the roads are icy and lumpy and if I step on the ice, my feet will sublux, the hip with slip out of position, and a double up-slip of the hips will happen. So to keep out of extra pain, I make that unwanted decision to stay inside and safe.

One of the many issues those of us face living with medical conditions is the numerous times we have to choose safety over participating in activities and events we’d love to be part of. Not respecting our limitations ends up causing added stress and damage to our bodies. But not joining in with others causes isolation and the loss of joy seeing places we love or would enjoy learning about and experiencing. If others think this is fun, please climb into our bodies and minds and experience the loss we feel. I would love to hike into the woods, walk down that snow-covered rutted road, climb that hill, lift that grandchild and snuggle with them, get that tight hug I so miss, and climb those steps to the top, for example. It is so hard to not participate in what is so “normal” to many and dangerous to me. Can you relate to losses like this?

Some days I can be strong, step away from those opportunities, and keep that smile on my face. And then other days, the loss of participating in activities both alone or with others just breaks my heart. I do notice that it bothers me the most when the weather is playing games with my condition. Storms arriving always add discomfort and make my body more inflamed, thus making my emotions tougher to cope with. But through the years I have learned to listen to my body.

Understanding my limitations is hard to accept, but allows me to smile and experience a better quality of life. But when one of our four sons and his family with two precious little granddaughters moved to Tulum, MX, I had to again fight that terrible sense of loss. I can never travel there to visit them. Despite suggesting my husband go and enjoy the trip, he refuses to leave me back home. Traveling out of the country with a sternum that shifts easily out of position with my bi-pap not being able to correct when the airflow restriction occurs, makes me feel so sad and so responsible to limit his life too. Because of my condition, we have had to stay close to home to be near the help of my manual PT’s offer. At each appointment, they reposition my structure so I can safely breathe and live the next days.

So, on this cloudy, dreary day, I share my emotions with you of fighting off that feeling of being left behind. But I know on my better days, I will return instead on focusing on how to better put these emotions back in check. At least I am alive, at least I have a husband who has never walked away from me with this unpredictability my condition has added to our lives, at least I had the honor of raising four sons and now watch their lives unfold as I age, at least I am more mobile at the moment and able to now write again, advocate, and get to the pool to work out an stay connected to others. The list of positive is right in front of my eyes, and it’s up to me to refocus when this sadness overwhelms my life.

May Life Be Kind to You,
Ellen Lenox Smith