A Phrase Commonly Heard by MPN Patients
(Editor’s Note: This post was written by PV patient, PEN Advisory Board member, and PV Reporter founder, David Wallace. The post was originally published in the PV Reporter.)
Isn’t it amazing how well we look? In a group gathering of MPN patients you will see very few wheelchairs, walkers, canes, portable oxygen tanks or other medical devices required for daily living. Behind the facade of “well-appearing” individuals, we silently suffer from a long list of symptoms including:
- Fatigue, the #1 complaint and it can be debilitating at times
- Pain (which can manifest itself in bones, joints, abdomen, back, arms, legs….and the list goes on)
- Itching (more formally called pruritus in the medical world)
- Dyspnea (a fancy medical term for shortness of breath)
- Constitutional symptoms
- Night sweats
- And the list goes on – more symptoms here
I doubt there are many among us who have not heard family or friends utter the familiar phrase“you don’t look sick.” Not really something we want to hear as it diminishes the “quality of life” struggles we go through living with MPNs.
Living in the “World of the Well” and the “World of the Sick”
Although we walk proudly in the “world of the well”, many of us live in the“world of the sick” or perhaps bouncing between the two worlds depending on our blood counts, spleen size, level of fibrosis or other intangibles. Almost like a “dual citizenship”, we stand among the chronically ill. Recent estimates put Chronic Illness at about 50% in the United States. Many myeloproliferative neoplasm patients suffer from multiple symptoms turning us into “human jigsaw puzzles” waiting to be put together by doctors who frequently disagree on a standard course of treatment.
The Spoon Theory
Why all the ramblings about symptoms and issues we all know? The above is a preamble to a post I read recently called the Spoon Theory by Christine Miserandino. She suffers from Lupus and provides an outstanding narrative on living with a chronic illness – using spoons as an analogy for how much energy she can expend in a given day.
While Lupus in not an MPN, the article stands as a common thread for all of us who live with “invisible chronic illness.”
The upside: live every day to the fullest!