Well You Don’t Look Sick

A Phrase Commonly Heard by MPN Patients

by David Wallace

MPN patients look fine

“you look fine to me”

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)
  • Headaches
  • Gout
  • Neuropathy
  • 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”

MPN puzzle

human jigsaw puzzle

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!

About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with “informed patients” and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward – “educating the patient is essential, so the patient can guide their physician to meet his or her needs.” PV Reporter is a comprehensive resource hub giving visitors vital tools to become “empowered patients.”

Comments

  1. Laura Hilton says:

    Great article. We with PV struggle with this very issue all the time!

  2. Thanks Laura, I found the Spoon Theory hit close to home and I love her analogy!

  3. caol johnson says:

    Spoons is great. May I add a book that is also insightful? It’s by Joy Selak and titled You Don’t Look Sick.

  4. I have not read the book, but have seen it suggested….Thanks for the input Carol.

  5. I like this site. My biggest pet peeve is “but you don’t look sick”. I always ask what sick looks like. All the while I have a terrible time. I have had 18 surgeries in the last 7 years and will be starting my BMT on the 8th. I hope this madness goes away and I really want this disease to disappear off the face of the earth. I have, however, learned to be very patient. If it were not for my wonderful Dr. Heidi, I would still be sick. She listened to me when nothing made sense. She stuck by me for 5 years and here I am. I really thought I was dead in those days. Best of luck to all of you and may God bless each and every one.

Trackbacks

  1. […] (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.) […]

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