i have been living with lyme disease from the age of 2... i cannot count the times that i have been ill or simply too fatigued to do anything but lay in bed for no apparent reason... i cannot count the times that i have been accused of 'making it up' or faking ill to get a day off. i cannot count the number of ridiculous tests i have gone through (mri's, blood tests, ct scans, etc.) - not covered by insurance, because 'lyme disease does not have this kind of chronic effect on people' - only to have every single test come up as inconclusive. i cannot count the times that i have had eyes rolled at me by doctors and bosses alike at the simple explanation that i have lyme disease. i cannot count the number of physical therapists and orthopedic surgeons i have spoken to about the mind-numbing pain i feel in most of my joints, most of the time (having arthritis in your mid-twenties is a little rare, to understate things a bit).
it does bring a little comfort to know that there are people out there who are speaking up and championing the cause of people who are living with this disease on a daily basis. i am lucky... my symptoms are more than manageable (most of the time). there are, however, thousands of others who are having to deal with inexplicable things happening to their bodies that no doctor can put a finger on. maybe if people - the doctors and administrators who have the ability to do something beneficial - actually start focusing on addressing this mysterious condition instead of simply dismissing it as they have done, people can stop suffering without an explanation. knowing what you are battling is half of the issue. actually understanding what is happening to your body is priceless. not being misdiagnosed and mistreated and scared out of your mind with worry over what could possibly be wrong with you is invaluable.
so, thank you, mandy hughes, and to the people at the lyme and tick-borne diseases research center for actually standing up and doing something about this. finally.