Living with a person who has EDS, I have learned many coping mechanisms because, yes, the whole family is managing, not just the person with the condition. My daughter will often say, “Tomorrow I am going to do this or that.” I’ve learned that what that means is, “Tomorrow I would LIKE to do this or that, but that’s likely not going to happen because when that time comes, I probably won’t feel up to doing that.” You may think that sounds harsh or unloving if you haven’t walked in my shoes, but this is how the language of EDS is translated, my friend. See, my daughter still has desires to accomplish things just like you and me, but to finish those things is another matter. The brain and heart say yes, but the body says no.
This coping mechanism of mine is the result of dealing with disappointment. Think about it…if your friend says she wants to go shopping with you tomorrow, both of you look forward to it. Then, the next morning she calls you and says she can’t make it because she’s not feeling up to going. You feel disappointed and maybe even a bit hurt. It feels like a letdown even though you realize it’s not her fault. You might even take it a bit personally.
My youngest son is a junior in high school now and this lesson is hard for him to process. The other day, he had made plans to go do something with his sister, only to be disappointed the morning of when his sister told him she was not feeling well enough to go. I could sense not only discouragement in his voice, but also some anger as well. I sympathized with him a bit because I, too, have felt these same emotions. I am older and have learned how to not take it personally which helps me to process these emotions in a healthy way. In time, he will become more understanding and realize the chronically ill sometimes don’t have a choice with what they can and can’t do.
I have to say that my daughter became a bit offended by his response. She thought that he ought to know by now that this is how life is for her and that he should have shown more understanding. I think she was a bit surprised when I explained to her how it actually feels to look forward to an event, only to have it cancelled at the last minute. That does not mean there is any blame to assign; it’s just a process to learn how to cope with that which takes years of practice. Even after all these years of living with EDS, we are still learning to communicate our feelings and look at the other person's perspective. So, I can lovingly say to those with EDS…don’t get offended when others sound disappointed when you cancel your plans with them; take it as a compliment that they still just want to spend time with you.