Hope

by | May 15, 2023 | Patient Voice

HOPE

 

I hope you never wake up one day and realize your illness will never get better

I hope you are never told you’re being denied care in the form of a letter

 

I hope that you never feel anxiety to see doctors out of fear

I hope that you never have to hear the words “there’s nothing we can do for you here”

 

I hope that you never have to undergo hundreds of medical tests from different doctors and specialists

I hope that you never hear the words “everything looks normal” knowing there has to be something they’ve missed

 

I hope your loved ones never leave you when you become chronically sick

I hope that you’re never so ill that you’re stuck in bed for months with nothing to do but watch the clock tic

 

I hope you never have to hear “it’s all in your head, you’re faking it”

I hope you never have to hear “you just need to lose weight, exercise, and get fit”

 

I hope that you never have to worry about disability claims being denied after waiting years

I hope that you never have to worry about how to pay all your bills and afford medical care, as these are some of your new fears

 

I hope that you never have to travel for days to see a doctor that treats you fair

I hope that you never search for years for the ONE doctor that actually cares

 

I hope that you never start out your day with nothing more than pain and fear

I hope that you never end your day feeling like there’s no point of even being here

 

I hope that you never lose the ability to stand or walk on your own

I hope that you never have to hear everyone you know judging you while they leave you in a room all alone

 

I hope that you never need a shower just for a private place to cry

I hope that you never get so tired of explaining yourself that you’d rather say you’re fine, knowing that’s a lie

 

I hope that you never find yourself in a hospital bed alone

I hope that you never have doctors that speak to you in a disrespectful tone

 

I hope that you never have to grieve for the loss of the person you once were, leaving you wishing you were more

I hope that you never have to give up all your hopes and dreams that you worked your entire life for

 

I hope that you never have to watch the world go on without you while you’re stuck in bed

I hope that you never know how it feels to want nothing more than to be participating in life instead

 

I hope that you never have to worry about how much longer you can tolerate the circumstances in which you‘re forced to live

I hope that you never understand what’s it’s like to feel you’ve got nothing left to give

 

I hope that you never understand what it’s like to have your own body at war with itself

I hope that you never have the burden of illness yourself

 

I hope that you never have a list of a medical history so long you can’t remember it all

I hope that you never take your health for granted anymore…

For someone like me, health is all that I hope and wish for

 

by Jillian McQuitty
Colorado

  • ME/CFS – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
  • CCI – Craniocervical Instability
  • C7 Radiculopathy
  • Fibromyalgia
  • POTS – Postural Orthostatic Tachycardia Syndrome
  • MCAS – Mast Cell Activation Syndrome
  • Takotsubo Cardiomyopathy
  • PPPD – Persistent Postural Perceptual Dizziness
  • Autoimmune Vertigo
  • ITP –  Immune Thrombocytopenia
  • Immune Deficiency Disorder
  • SLE – Systemic Lupus Erythematosus
  • Immune-mediated, Small/Autonomic Fiber Polyneuropathy
  • Spinal Stenosis
  • Scoliosis
  • IBS – Irritable Bowel Syndrome
  • Gastroesophageal Reflux Disease
  • IST – Inappropriate Sinus Tachycardia
  • PVC – Premature Ventricular Contractions
  • IC – Chronic Interstitial Cystitis
  • Fibrocystic Disease
  • White Matter Abnormalities – Brain Lesions
  • Chronic Rhinitis
  • Depression
  • Vitamin Deficiency

This poem was submitted as part of the Reflections of ME/CFS and FM and Long COVID Awareness Day Virtual Event on May 9th, 2023.

#MillionsMissing #MillionsMore #Hope4MECFS #Hope4FM #Hope4LongCOVID

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