I have been EHS for over a year and one thing I felt during my sensitivity is how general public is unaware of EHS and even medical doctors are not aware of this condition. Hence, I get very little sympathy when I tell people that I am EHS. I look normal to people. I do not have bowled head from chemo or have broken leg with crutches. The condition is not known at all and I have to explain to people what it is. People know a lot more about cancers, diabetes, arthritis and etc…
The effect of being EHS is isolation because you stop using communication devices in most case and you contact your friends less. Also your friends will contact you less because they are so used to using cell phone. I do have house phone and email but I just do not get contacted like before I was EHS. It also creates incontinence to people if they have to turn their cell phone off or turn it to airplane mode. I do not proactively try to hang out with people because I know they have cell phone and I have to really consider the place I can be comfortable (Surrounding people and fluorescent lights).
One of worst part about EHS is lack of support and uncertainly about recovery. I have never gotten a invitation from a friend or family for get together telling me that “It’s ok. We will have everyone turn off their cell phone so come out”. It never happens… Also the groom sets in when I think about the uncertainly of recover that if I ever recover or how much I would recover. The recovery process is not liner and it is bit unpredictable.
Luckily I have a family and my toddler daughter keeps me busy, so I never felt that I was bored and have too much free time. Sometimes, I feel like I am in bad dream or I am in complete different dimension. Such a surreal experience. I was normal like everyone else and all the sudden I am sensitive to a lot of things. I hope to live and cure my condition and share my experience with everyone.