Before you walk in the door to treat my daughter, try to understand what we I have gone through.
She became ill about 14 years ago and was not diagnosed until ten years later. We did what everyone else does; went from doctor to doctor to no avail. She has been home-bound for two years. She worked for the same company for 18 years, initially in the office, then telecommuted full-time. Two years ago, her condition worsened. The company allowed her to work part-time, but she became so ill that she was unable to return to work when required. She lost her job.
With her wishes and long-term hopes diminished, her goal is “to be well enough to work part-time.” She no longer dreams of vacations or having a family. She is gifted and talented, like so many of the other incredible ME/CFS patients I encountered in my advocacy work, but she is also isolated, surrounded by four walls and dependent on the computer/phone for human connection.
I am not her hands-on caregiver. She is married. I help however I can; she knows I am there for her.
If I think about it, it is almost too much. I am consumed by sadness for my 40+-year old child. How do you help this pwME, what can you say? I began to see a therapist to learn how to be emotionally supportive, to learn how to tolerate the unbearable. I volunteer and advocate unrelentingly.
There are fewer than two dozen ME/CFS specialists across the US. My daughter in California is fortunate now; she only has to travel 60 miles each way to see hers.
Estimating from the National Academy of Medicine report there are up to 300,000 Californians with ME/CFS (3), an estimated 84 to 91 percent of whom are still undiagnosed or misdiagnosed (4).
So, as a mother, I ask you to imagine that you have a child/spouse who is unable to leave their home, or worse, their bed. Unable to work, with so much potential that cannot be used. Then, treat my daughter compassionately.
– Bev., mother of a pwME