I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.
Day 7- #ZebraStrong
What does being zebra strong mean to someone like me, someone with HSD? Physically it means being able to redefine what exercise is. It means not over stretching connective tissues, but learning how to shorten them, which is not taught by any fitness instructors unless they understand hypermobility. It’s learning new ways of moving your body through trial and error. This takes a lot of time and it may not come for awhile and many flare ups. It means listening to your body and not over working. It means finding new ways to do physical things like writing, opening jars, driving, office work at a desk, picking things up and even walking. It means using mobility aids, compression garments, and braces when you need to.
Being Zebra strong also involves being mentally and emotionally strong. Your symptoms will be different every single day and you will not be able to predict what you can and can’t do. This makes having a social life very difficult. You will have more issues with friendships and relationships. Relating to able bodied friends is tough when you spend a lot of time in bed, going to appointments, researching, and dealing with the financial hardships that come with being disabled. We cope with depression for a lot of reasons but one being sadness over missing out on a lot of social & financial things that normal people do, and seeing your friends go on without you. You will have to adopt a “go with the flow” attitude when many of us are used to being perfectionists. This means having to sign up for the bare minimum in case you are feeling too bad to get a lot done. Your work life will be affected and your sense of purpose and meaning which often times revolves around what we do for a living will need to be re adjusted. This requires a lot of mental and emotional strength!