What I Want My Family to Know About My Ehlers-Danlos Syndrome This Holiday Season

With a chronic condition such as Ehlers-Danlos syndrome, “tis the season to be jolly” takes on a whole different meaning. For me, I get something called season depression, which is separate from EDS but can correlate with chronic pain as well. While everything around me is changing, my body feels as if it’s slowly progressing into a slow and painful fatigue that people surrounding me might never fully understand, not to mention medical professionals. And then my brain catches up and remembers all I wanted to do before Christmas, books not read, ideas unfinished. Genetic disorders are tricky to diagnose, along with a handful of autoimmune disorders that usually come into play with EDS. So at the end of each year, I usually tend to focus on how much progress I’ve made, versus everything I wish I knew about myself during the closing of the year.

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

1. You live healthy, normal lives, and I do not.

This is something that has struck a cord with me this year, because I’ve had to step out of my chronic bubble and forgive people for not understanding how I feel, or how I live. It is not my family’s universe, nor is it their own personal human experience to feel this type of pain and exhaustion. I cannot expect them to understand me, when I can barely remember what it was like to wake up and feel healthy.

2. I’ll know more about myself next year than I know about myself now.

It seems that people of all personality types tend to get anxious towards the end of the year; things that never got done, places we thought we’d be in life by now — all normal emotions at the end of the year. Time is running out, but it’s also starting over again. With health problems though, these emotions escalate. Will my new doctor actually help me? How long will the wait time be for an appointment? Was I right in thinking that I have this said condition along with EDS? Will anyone actually want to help me?

There are only a few knowledgeable people in my state or in my surrounding states that can actually help me, and I am very grateful to be in touch with these doctors. But after almost four years of searching for answers, meeting a whole lot of doctors, along the way, hope is something I can only hope for, and keep looking for each new year. Because maybe these doctors don’t have all the answers as to why I’m feeling this way, and hoping for those answers is better than believing hope doesn’t exist at all.

3. What am I grateful for?

I’m grateful for each day, as painful as they can be. I am grateful for this country and our doctors and medical staff. I am grateful for the little things; I am thankful that my family is in good health this season. I am thankful for my home. I am thankful for this generation and future generations, who will probably know more about myself than I do. I am thankful for the opportunity to chase after the answers I am looking for, and that I’ll be here to find them.

Lead photo by Thinkstock Images