Injury Adventure Stories Versus Invisible Illness Dramas
Broken arm adventure story
My 6-year-old daughter broke her arm at school yesterday afternoon. Today, after an early morning hospital checkup, she was itching to get back to school so we awkwardly wrestled her uniform over the bulky plaster cast on her right arm and dropped her off.
At school, she was given a hero’s welcome. Her classmates were eager to hear what had happened, and the teacher kindly let her stand up the front to tell her story. Some close friends handed her a homemade sympathy card. And she can’t wait to have her playmates sign the cast once it’s fully dried!
I’ve been struck by how different my daughter’s visible injury adventure story has been to my invisible neuroimmune illness story over the past six years.
Diagnosis and treatment: broken arm
With a broken arm, doctors know what to do. They ask a few questions, gently prod the arm to assess the likelihood of a break, and send the patient to get an x-ray. Once the break is confirmed, the patient goes to hospital to get the bone reset and placed in a cast.
Simple. Predictable. A routine procedure.
Recovery: broken arm
Bones take time to mend. Inconveniences and temporary limitations are involved. But in the end, broken bones heal: it’s expected that my daughter’s life will go back to normal within about six weeks. She’ll have a good story to tell in years to come, and the break will become a distant memory.
The ME/CFS drama
In contrast, my invisible illness experience has been less of an adventure story and more of a poorly written drama. Adventure stories offer action-packed plots with a clear progression — an orientation, a series of compelling complications, a suspenseful climax and a satisfying resolution — whereas invisible illness dramas lack structure, progress haphazardly, and fail to resolve.
Slow and sloppy plots are not what great stories are made of! And without a happy ending, ME/CFS is not a crowd-pleaser either.
Diagnosis: ME/
Doctors are stumped when a patient’s symptoms don’t fit into a clearly defined category. It can take years to get a diagnosis, after many exhausting and disheartening failed attempts at finding the cause of the patient’s illness.
Treatment: ME/
Treatment protocols are at best nebulous and only partially effective for a small percentage of patients. At worst, they are inaccessible (particularly to the most severely affected patients who are unable to leave their homes) and even harmful.
ME/ has no known cure, and the official treatment protocol is hotly debated. There is considerable pressure for the current recommendations to be scrapped, due to www.bbc.com/news/health-43490335 study whose conclusions are misleading.
Recovery: ME/
As for getting back on the horse and returning to your normal life, this is another difference between a broken arm and ME/. www.meaction.net/about/what-is-me. I am one of them. And there is no end in sight.
The symptoms of each ME/ patient wax and wane like the sea tides, ranging from mildly inconvenient to severely debilitating depending on the day; but contrary to the rhythmic ebb and flow of ocean tides, our symptoms are unpredictable. Our only way forward is to make drastic lifestyle changes — lopping and clearing away energy-sucking activities (even the fun ones) to allow for adequate rest time — and to do the hard emotional work of rebuilding our sense of self on a barren and unfamiliar plot of land.
Not all good stories have happy endings!
Thankfully, a story doesn’t need to have a happy ending to be worth reading. Similarly, our lives don’t have to follow the expected trajectory in order to be meaningful.
We love our children with all of our (limited) strength. We contribute and volunteer where we can, to make a positive difference in the lives of others. And we remain thankful for the gift of life — for while there is breath, there is hope…
Perhaps, some day, the typical ME/ story will be more like a fast-paced adventure than a dreary drama. With more funding for research, future generations of ME/ sufferers might be able to follow a clearly defined diagnosis, treatment and recovery path.
Until then, we do our best to strengthen what remains and appreciate each new day we are given: Dum spiro spero — while I breathe, I hope.