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Absolutely. Many dont get it it seems.yes,i feel isolated from so many people.it has to do with fact our bodies doing what it does whike theirs just does the normal stuff.ours is different.cant explain it as they dont have it happening and will be unable to put themselves in our shoes no matter how much they may try to.so yep,over time as things worsen,there becomes more and more a seperation from others and it sucks not being able to interact with others as one used to be able to.it really does.unless one is actually going through this damn thing themselves,they really dont get it.but at least some do try to.
Ya i remember those days in home i grew up in.i get the frustration.dont let it get to you is best i can say.
Do you feel that society has pushed you to the side or that you don't belong due to muscular dystrophy?
You're definitely not alone in feeling this way. Social isolation is actually quite common for people living with Duchenne muscular dystrophy. Young men with DMD often feel left out of social activities as their peers Show Full Answer
I tend to isolate as things progress for me as dont want stared at or laughed at.but i do get out when able to and am usually surprised at reaction from people.some of course are just ignorant but i get more that are helpful than anything.
Hi PaulG: It's my experience that those presenting as "non-normative" in whatever type of expression (mobility, cognition, emotionality/regulation), tend to be given a wide berth as what is affecting them is unknown, and hence, may feel intimidating to interact with or otherwise poses a challenge to interact with...which many folk simply feel they don't have the resources to engage with. Being "unseen" or unwitnessed... feeling like a ghost, even being amongst many folks, can really be a challenge. At least, it has been for me.
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