As a parent, the beginning of this journey felt as if our child was slipping through our fingers. January of junior year of high school, after a normal holiday illness, she realized she couldn’t think. She would walk away not realizing a friend was in the middle of a sentence. She could hear a class lecture, but it made no sense. By April, her exhaustion was so profound that she struggled to walk from the car to class. I picked her up every day at lunch; she was ashen by then. We kept thinking she would get better. She was a former club soccer player, a top student. This didn’t make sense.
From 2010-2017, we went through tests run by rheumatologists, pediatric neurologists, allergists, ENT’s, PsycD’s, etc. Nothing was wrong. But something was very clearly wrong. We were lucky to have very collaborative doctors, although it was hard for them to sense the level of sheer exhaustion through which she struggled. Fortunately, she would get red, hot rashes on her joints, knees, and calves, because otherwise she worried that maybe she was making this up.
In 2017, we finally we landed with an infectious disease specialist whose son had been ill for years. He understood the battle. Our daughter’s blood test revealed Coxsackie B antibodies as high as the test could register. We were relieved. Here was something! Or maybe it was something. The most difficult thing about a disease without a clear set of diagnostic parameters is that you’re never really sure what it is, or how to treat it. But we were with someone who was determined to make the journey with us.
She is halfway through a PhD and, although she can seldom be out with friends, she is grateful that she functions as well as she does. Some people have been fighting this illness for thirty years. There are people who are bedridden, who can’t stand light or sound. It is terrifying. With NIH recognition of ME/CFS, we feel like we are gaining momentum among the medical community. We can be on this voyage together, patients, clinicians, researchers… and parents, who never lose hope that there is a way for their child to win back their future.
If healthcare professionals would let people with ME know that exercise can make them worse, and if they could help patients understand that relative inactivity is a guard against further decline — it would be helpful. Jen Brea, who was a Harvard grad student when she fell ill with ME, wishes she had understood this herself. Her Sundance award-winning documentary, Unrest, is available on Netflix. It’s riveting and a great primer.
Our daughter says that the exhaustion and brain fog make processing information difficult. Slowing down discussions in general, and repeating information if someone looks a little lost would be great. No one really likes to admit that information has bypassed them.
– Katy C., mother of a pwME