Present
Beyond the medical jargon, there are real people living with the pain, disappointment, and loneliness of ME/CFS every day. Here are some of their stories.
The worst part of the disease is people not believing you.”
Terri
Some of the symptoms I experience are headaches, shooting pains in my head and my face, dizziness upon standing to where I almost pass out, brain fog— I can't remember what I'm trying to say. I will misspell words. I have extreme sensitivity to sound, light, touch. I have joint pain. I have fatigue that is so extreme there are times where I can't move my body. I can't speak at times. I have issues with memory. I have issues with muscle strength.”
HEIDI
When I was very ill, I could not stand up for more than a few minutes…I could only heat up food, as I didn’t have the energy to chop and cook.”
AISLING
The doctor had no idea what was wrong with me…he's not giving you anything useful. Nothing except a big bill.”
HOWARD
A neurosurgeon told me I don't believe in it…I went to a neurologist. I don't believe in it. So it's really hard to get someone to help you when the people that are supposed to help you don't even believe you.”
CHERYLLE
During periods that I felt better, I would try to go outdoors. I would try to walk 15 feet outdoors, and then 30 feet the next day, and then 45 feet the day after that, and then wham. It would all be over, I'd be back in bed again.”
HOWARD
A bird flew down my chimney on one of those dark days when I couldn’t get out. It was trapped inside with me until the animal rescue people came. I felt the irony as the bird was freed, and I was left imprisoned in my own home.”
AISLING
One of the most devastating aspects of this illness is watching your life pass you by. Your peers are out living their lives. You see it on social media—family outings, vacations, job promotions—and you feel like you're withering away...There is such grief in the life you had and the life you dreamed for yourself, the person you thought you'd become.”
HEIDI
I missed my life.”
BOB
It is lonely sometimes because my life is isolated…People remember you when they have time and that isn't often.”
CHERYLLE
We had to move back in with my parents so that I could have the help I needed, and so that my son could be taken care of the way he should be.”
HEIDI
The horror of being a mother of young children and not being able to care for them, play with them, and go places was almost the worst part of this experience…I know they will come out stronger for it, but I would hope they don’t have bad memories of a mother who was sick or unavailable a lot.”
AISLING
My husband stopped wanting to plan things with me because I would often cancel. I gave him the option of leaving the marriage because of the burden that I felt I was on his life.”
CHERYLLE
I lost my marriage of 34 years.”
HOWARD
Imagining having all the money to do research. Having all the money to do FDA approved drugs. Finding all the money to have ME centers of care with a doctor, nurse, nurse practitioner, patient navigator, care coordinator, social worker. Finding money to have a paid activist fighting every single day brings tears to my eyes. That is the dream.”
TERRI
People with ME/CFS deserve justice. They deserve to have their disease taken as seriously as any other debilitating illness. The government needs to be more aggressive about their support. It’s time to wake up. It’s time to get involved. It’s time to sound the alarm.”