MORE SURVEY RESULTS:

What, if anything, has made recovery or coping more difficult?

	
Sampling of Responses:
		
	Conflicting diagnoses

	Isolation

	Having an invisible illness...you don't "appear" to be sick

	"People saying I look fine, just get used to it, etc."

	Lack of understanding by doctors, family and friends
	
	Condescending doctors
	
	Loss of independence (had to give up driving)
	
	Looking at a computer screen all day

	High stress job

	Unable to walk alone
	
	Being so young and having this problem

	Lack of doctors willing to go “above and beyond” call of duty
	
	Lack of a real diagnosis
	
	Drugs that make you feel even worse
	
	The emotional impact of chronic illness (especially at a young age)

	"Having to curtail a business that took two years to make successful"
	
	Having to interrupt plans

	Coping with the unknown when symptoms seem like they’ll never end
	
	Unable to predict when attacks will occur
	
	Relapses

	Inability to afford more treatment

	Frustration of the unknown

	Being told there is no help

	Not being able to work--financial difficulties
	
	Stress of a full-time job and a “special needs” child

	"Other people labeling me an invalid"
	
	"Every time I think I’m getting better, it starts all over again"

	Isolation, inability to work

	"The way it has changed my whole life...you name it, I can’t do it"

	"Explaining to a 3-year-old why mommy can’t do certain fun things"

	Having to go on disability

	Despair of ever feeling better

	"I'm an RN and self-conscious about people noticing"

	"Medication makes me so sleepy, I can't work."

	Insensitivity of people performing tests