Ehlers Danlos Syndrome Awareness Month Day #27: Frustration and Medical Devices

Ive had the same GI problem for over a year now. The cycle just goes the same way. Eat, nausea, cramping, vomitting, cramping, diarrhea (or constipation). All my doctors thought it was just IBS, but ive taken every med, ended up in the ER 4 times and im still struggling just to survive. Since this started I’m down around almost 20lbs. I cant eat without feeling awful and if I dont eat I also feel awful. I find myself wishing for just one doctor, just one test that will show something. I find myself wanting to say “hey! give me a tube, I’m ok with it, as long as its not this hell.” but then nothing happens and I just end up crying in my bathroom wondering what the hell I did to deserve this. I just feel like no one understands what I am going through, and I dont find that my other friends with chronic illness have any luck in this department either. Suffering in silence is not a choice, its the only option when answers and treatments seem so far away from you. I cant even get up the courage to open my mouth and talk to someone about how I feel. I just wear a mask and pretend like everyone is ok because i feel like opening up wont solve anything either. I am not sure if they will ever figure this out, but if they dont then will I still be able to pursue my dreams? or will it all just fade away?

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One thought on “Ehlers Danlos Syndrome Awareness Month Day #27: Frustration and Medical Devices

  1. you are not alone. i am in same boat too. cycles of times ok other times nothing nothing seems the dread it has on us, been through many a test myself and having to travel far to see a specialist is an all day affair. it is one i have had some doctors look at me and even say are you sure you not doing this for attention or are you self harming. i wanna scream at that point and say no i am not if i was would i be here. EDS causes issues and there are psuedo obstructions, gastroparesis, rapid dumping, gi issues that go along with my connective tissue disorder.

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