Recently, while I was having a rougher day with my condition, called Ehlers-Danlos syndrome, I had this unwanted and embarrassing feeling of wishing someone would think to ask how I was doing.

I find that since this challenge has been going on for me for so long, others often just accept that I am coping. But at the age of 75, there continue to be moments I wish I didn’t have to feel worn down physically and emotionally by the daily, constant work it takes to still be in this world.

The work I must do is restrictive and redundant, but it’s necessary to ensure that I have any quality of life. I have to make sure I have the correct food and medications my body can metabolize. I work daily to strengthen my muscles since they have extra work to do, supporting my ligaments and tendons that are compromised due to my condition’s collagen defect—a genetic issue that can’t be corrected with a collagen supplement.

Don’t get me wrong, I am grateful that I have lived a good life despite my medical challenges. But just once in a while, it would help fill me up if someone would remember and recognize the hard work it takes to live with a chronic condition you didn’t sign up for!

Sometimes, when the challenges of living with pain are harder than usual and we feel like we’re drowning, we must work even harder to get ourselves up above the water and tread, waiting for the moment that brings some relief. Those in particular are the moments when a simple check-in—a call, text, or email—would mean the world to keep our spirits up, to encourage us to fight to keep going.

But many days, except for my husband’s support, I am on my own as I take this on. Living with a condition that others don’t know or understand, especially when it’s invisible, is tough. When the condition isn’t plainly evident unless someone uses a brace or device to help with mobility, it can be easily forgotten that this person is working constantly to maintain their quality of life.

So if you know someone who deals with a daily medical struggle, please take a moment today to let them know you care. Encourage them and cheer them on. Compliment them for the work they endure with their daily grind to keep alive, trying to achieve the best quality of life possible. Ask them how they are doing, and allow them an opportunity to vent.

It may not be a fun or comfortable conversation for you, but they need the support and encouragement. Help them to not feel alone in life’s journey. Trust me, a simple check-in will mean the world to them and help fill that void of unwanted loneliness brought on by their challenges.

Reach out, care, and remember to show compassion.

May life be kind to you…

—by Ellen Lenox Smith

About the Author:

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for the U.S. Pain Foundation and is a member of its Board of Directors. She is also active with the EDS RI support group.

Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 53 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.