Featuring a doctor and three patients and lasting all of eleven minutes long, this Canadian film just out might be ideal to help your family and friends understand Chronic Fatigue Syndrome a bit better.
People who could be your neighbor anywhere describe the human experience of having chronic fatigue syndrome. There’s something about seeing real people with ME/CFS that is so impactful.
Those of you who are former ‘go-getters’ will empathize with the woman, who after describing herself as on the go all the time pre-ME/CFS, said the worst thing for her was the need to sleep, sleep, sleep.
Family members will nod their heads as another woman talks about her husband doing all the cooking, cleaning, laundry, and grocery shopping.
Everyone with ME/CFS will understand when a woman, flat on her back, asks with some exasperation, “Why would I choose this isolating existence” and relates a doctor telling her, “Look at all these (other) people; they’re really sick!” as we watch another woman with ME/CFS stop halfway up her stairs to rest.
Anchoring all of this is Dr. Eleanor Stein, a psychiatrist who’s had ME/CFS for over 25 years, who calmly describes the medical experience of ME/CFS.
She immediately goes to the core symptom: post-exertional malaise. She then hits all the rest: the unrefreshing sleep, the cognitive problems, and the other symptoms you all know so well.
Later, she states, “Don’t Give Up!” and states that most people can get a little (or a lot) better with the self-management tools we have right now.
We all want ‘the cure’ but in the meantime there’s the day-to-day stuff in life to take care of.
Loss of Purpose
“My Life Has Become Very Quiet”
I appreciated Dr. Stein’s comments about the heavy emotional costs ME/CFS exerts and wonder how could it not, when, as she notes, it deprives people of their ability to use their hard-won skills, to be the fathers and mothers they wanted to be, to be the breadwinners they were.
Dr. Stein talks about the ‘loss of purpose’ that’s endemic in people with this disorder. They were contributors, and now that ability to contribute seems to be gone. What a void is left! And how does one fill up that void?
One woman in the film asked how to go from being an “active, hardworking woman connected with people every day” to being mostly isolated and alone in her house for days on end.
These are the central questions for many people with ME/CFS.
What “Falls” There Are
The adjustments in status and functionality can be incredible.
I recently heard of woman with a PhD in physics who’s replaced physics with knitting, and is happy to be able to knit again after years of being essentially unable to do anything. I always turn to Mary Dimmock’s son who was traipsing across Asia by himself pre-ME/CFS and is now confined to his house. Then there’s Jamison, the former weightlifter, who had to have his mother drive him to see the doctor. The stories go on and on. So many people have stories that can make your mouth gape open.
As Shakespeare said, “What a fall there was,” and these indeed are falls of Shakespearean magnitude.
That’s one of the problems ….
The huge ‘falls’, the almost unheard of lack of energy is just too much for many, and that surely drives the stigma; the lack of belief from the medical community and from friends and family. People cannot believe (and it’s understandable) the sheer degree of struggle it takes to do tasks so simple for everyone else; the limitations that are present do not compute, not for family members nor for doctors. Only the person with ME/CFS understands.
Do What Makes You Feel Better
Dr. Stein’s main recommendation is to evaluate what things make you feel better and what makes you feel worse and then do what makes you feel better. If that prescription sounds easy it’s not. You have to throw away the demands of others and the demands we put on ourselves to do that and that’s very difficult, but it’s helpful.
She also notes that group settings help people remove the doubt that comes with ME/CFS as people meet others with similar problems. Dr. Stein’s (free) manual contains, among many other things, a way to create groups and benefit from them.
I consider these four ME/CFS patients and ourselves the group for now, and I say, “well done” to them.
If the video is not showing up for you on the blog you can find it here.
- Check out the how the film, which was inspired by the filmaker’s mother, came to be made here.