It has been some time since we utilized this blog but as your new president and the previous blogger for the site, I would very much like to return to use of the site for this purpose. In previous years, I have utilized the site to share some thoughts on life with EDS as well as experiences I would like to believe are as close to universal as experiences will ever come in this lifetime. It is my hope as we increase the frequency of these posts, more of our online community will come to visit and make connections through here.
I will begin by saying, I would not be here were it not for this group. I have made connections I will keep for a lifetime that extend far beyond “just” having EDS. I firmly believe each of us can easily begin to see ourselves as so much defined by this condition because there is no single day or hour not impacted by it BUT I also think there is an importance to defining ourselves by the things that make us wonderful and unique and brilliant and beautiful away from this–and even within the EDS community, I have found people who share in what I love and I will be forever grateful for the people who understand what it is like to have EDS and what I call, “AND fill in the blank.” What I would consider one example is, “live with EDS AND love Taylor Swift.” These people are my friends and my EDS family. I hope you will find people who can help you on your EDS journey but also connect with you in a way that fills in your blank.
ANYWAY, (I know I tend to ramble), today’s topic is something that stems from a conversation I had yesterday evening with an amazing support group leader so incredibly dedicated to her Wisconsin region you would be hard-pressed to find another similar. It goes something like this, “nearly all of us tend to see ourselves as mild because we see another person with EDS we perceive to be ‘worse’ than us.” The conversations are along these lines and often with people who don’t even have EDS, “I have mild EDS. Some people with EDS can’t even work.” OR “I have mild EDS. Some people with EDS rely on a wheelchair every day and I can walk.” OR “I have mild POTS. Some people with POTS pass out every day.”
The “thing” is not that we actually are this perceived mild but so much that we don’t want to take away from another’s life with EDS. Instead of looking at how our symptoms improve or worsen day-to-day, we feel a sense of guilt over these things. For example, I work an intense job almost always more than 40 hours a week. At one point in my life, I was working this job, serving on the city council, and attending graduate school all at the same time. During this period, I almost felt like an intruder in the EDS community despite struggling so much with pain there were days I felt like I might die from the pain because there is no way I could fit with people who couldn’t work. Those same people who were unable to work but were still able to raise children likely felt mild compared to those who were unable to raise children and struggled to do much in a day.
Right now, the greatest struggle I have with my EDS is pain. I have never struggled with the fatigue of the condition. I have little concept of what that portion of the condition is like. This does not take away from “fitting” here nor does it mean I need to describe myself as “mild” by comparing myself to others any more than a person who cannot work would need to make themselves feel guilt because I am able to do so–I would never expect such behavior and would feel immense guilt were someone to do so.
You all belong here. You belong here regardless of wherever you perceive yourself to fall on some scale our brains have invented. You can have empathy for differences in situations without taking away from the parts of your own EDS affecting your life. On days you feel better than others, reach out a hand to them. On days you feel worse than others, take that outstretched hand.