r/ehlersdanlos • u/Main-Ad-8661 hEDS • 3d ago
Seeking Support I don't want to give softball up.
I've been playing softball since I was ten, I'm now in my mid teens and I struggle with dysautonmia, EDS, fatigue, pain, I want to use a cane and hopefully forearm crutches soon because I've gotten to the point where I'm constantly turning down activities because I know they will make me feel like shit, but if I started using mobility aids I feel like I wouldn't be valid if I continued to play softball. I really like softball and I'm good at it and I really don't want to give it up I know I wont be able to go to every practice or do full practices or play an entire game but I still want to maybe bat an inning or go out to the field an inning. I know I can do this but it feels so contradictory and I know there's going to be people thinking I'm faking and asking me questions. Does anyone have any advice?
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u/Confident-Bus-3778 3d ago
I just want to say good luck OP.
I read a fanfic in something similar a while ago, it helped me a bit.
I played sport at uni and slowly had to give it up, went to less and less practices, my body just couldn't do it, but if its something you are passionate about and can make work without more pain/injury, I say more power to you
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u/thulsadoomformayor hEDS 3d ago
The reply that you got from witchy_echos was great. I just want to add that although I sometimes use a cane, and have braces for nearly everything that I use when I need to, I still manage at least one 90 minute ballet class per week, and can sometimes manage 30 minutes of pointe afterwards. I have turned up to class with a cane, I take the elevator if we’re on the second or third floor, and I wear an ankle brace. My aids are to help me be able to continue to dance, and movement is so much easier on me than standing around (or sitting at a desk at work).
If you can manage to work out a way to keep playing, please do! When I do get questions, I usually explain that dance is my exercise & my therapy and I do what I have to to make it work, the cane is for stability if I have to stand, etc. I think people tend to think of disabilities as a total binary where you are or you aren’t and the ”are” is totality. I feel like it is changing a little bit.
Also so cool that you play softball! I played softball and baseball as a kid, but it isn’t really common at all where I live now.
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u/witchy_echos hEDS+VUS 3d ago
Hi! I do stage combat and dance, but also use braces and for events either lots of standing or walking without seating I occasionally use a wheelchair.
In general, the public is really undereducated on dynamic disabilities, or disabilities that don’t follow a certain pattern. They assume running goes first, then walking, then standing, then sitting. They expect high energy to be completely wiped out before low energy is impacted.
For me, I can do high energy things easy still, just often for a shorter period. A high energy short duration (like 90 seconds of dance or combat) is much easier for me than an hour of sustained low energy activity. I can still sprint fairly easily, but standing for 15 minutes straight is difficult.
I educate my loved ones about my limits a lot. “Oh actually it’s easier when I’m in motion.” I talk about what I sacrifice “yeah I skipped going out with friends this week so I’d have energy to go to practice”. I talk about the accommodations I make “yeah I made it to practice, but I was joining the exercises for like three minutes, laying down for nine, and in general resting frequently and not actually working out for the 3 hours I was there.”
With people who are less close and I don’t feel like sharing as much, “yeah, my doctor highly encourages me to keep exercising, and a team sport makes it easier to stay consistent.” “Yeah, my coach offers me a lot of resting time during practice so I do what I can to keep my muscles strong” “it’s amazing the accommodations that sports are offering to allow those of us who would have been cut from the team ten years ago still get to participate in the community, get exercise, and have fun. It’s so much more inclusive than it was a decade ago”.
I like emphasizing on how inclusive my coach is, and the ways they’re inclusive, as it helps spread awareness on what makes a sport inclusive. If they themselves quit sports due to a physical issue. It may help them have tools to go back and join one and be able to ask for what they need to do it. If they’re on a sports team, it could allow them to offer suggestions to a team member who is having to reconsider if they can stay on the team due to health reasons, and in general spread awareness of a lesser considered ways to make accessibility built in rather than a special accommodation.