Lives Interrupted: the Hidden Costs of Having a Neglected Illness

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Lives Interrupted seeks to illuminate the economic and other costs of having diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia, postural orthostatic tachycardia syndrome (POTS), post-treatment Lyme disease, and long COVID. These diseases affect millions, typically receive little research funding, and, as a consequence have few good treatments available. Find out more about Lives Interrupted here.

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Homebound – See ABC 's story here

My Journey and ME – See Don's story here

Entire Adulthood taken from me – See Megan's story here

My Labyrinthine Journey with a Covid Coda – See Rondo 's story here

Knocked Out Of The Job Of a Lifetime – See Bob Graybosch's story here

Structural Failure – See Allyn Archer's story here

Full recovery in 2020 – See Ani W's story here

My non-miraculous, extremely slow, non-recovered, successful life, so far – See JudyH's story here

My cost of living crisis – See Georgie Coghlan's story here

Beyond the Birdcage: Inconvenient Truths About Myalgic Encephalomyelitis – See Jennifer McBryde's story here

How Swine Flu Changed My Life Forever – See Corey's story here

A career just starting cut short. – See Ani's story here

Adverse Reaction to a Flu Vaccination – See Azalea's story here

Post vaccination – See Kitty's story here

Nursing Myself – See Alison Wiltbank's story here

Lost in Time – See Bryan's story here

Searching for answers/Learning acceptance – See Leslie Fellows's story here

M.E STOPPED MY LIFE – See Mary's story here

Everything is Gone – See Lavenderblue 's story here

A Broken Journey – See T-Rev 's story here

Debilitated – See MD's story here

30 of 33 years gone – See Duckcove's story here

Patte’s Lyme Journey – See Patte Wood's story here

Living life on a 2 inch bungee cord – See Diane's story here

I’m still standing! (ack to Elton John) – See Drdragonmama's story here

Still Fighting… – See Steph's story here

Post Covid evolved into Post Viral Syndrome and Fibromyalgia – See Henchman D's story here

Bowed but not broken – See Ann's story here

Wobbly legs and ME – See Anna Marie's story here

Not the life I expected – See Stéphanie's story here

Nobody is Listening – See Dea's story here

Some recovery and a lot of determination – See Ishtar's story here

This disease has taken 32 yrs. of my life – See Brie's story here

Never Better – See LauraB's story here

My adult life should have been just beginning. Instead it was forever stolen from me. – See Jo-Anne's story here

Career, family, fortune, friendships, reputation wrecked at 34y – See Remembrance's story here

Fibromyalgia For 2/3 of My Life – See Emily's story here

Losing a life of science. – See Christyne Bliton's story here

A full and promising life redefined by chronic illness – See Drew's story here

CFIDS & My Disability – See Dave's story here

Physical therapist assistant with Non-rehabable illness – See Anna's story here

Loooong Covid – See Elizabeth's story here

From caregiver to patient – See Lynn R's story here

Once on track to becoming CEO – See Amy S.'s story here

Cancer and ME – See Suzie B's story here

Lyme+ to ME – See Mima 's story here

A long slog – See Cparks's story here

Long ago in a distant place… – See Cort's story here

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I’m still standing! (ack to Elton John)

Name: Drdragonmama	Years Ill: 13
Location: Almena, United States
Former Occupation: Psychologist/Executive
Current Occupation: psychologist/author
Former Activity Level (0-100): 90	Current Activity Level (0-100): 50
Total Projected Economic Losses For Years Not Worked: $650,549

See Drdragonmama‘s story and her most impactful loss

Still Fighting…

Name: Steph	Years Ill:
Location: Indianapolis, United States
Former Occupation: Respiratory Therapist
Current Occupation: Respiratory Therapist
Former Activity Level (0-100): 100	Current Activity Level (0-100): 50

Story: I had my daughter in 2010. My life changed immensely. I had this beautiful human to be responsibl…

See Steph‘s story and her most impactful loss

Post Covid evolved into Post Viral Syndrome and Fibromyalgia

Name: Henchman D	Years Ill: 3
Location: Luton, England, UK
Former Occupation: National Operations Manager
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: £162,479

See Henchman D‘s story and his most impactful loss

Bowed but not broken

Name: Ann	Years Ill: 6
Location: St. Louis, United States
Former Occupation: Chemo and Infusion Nurse
Former Activity Level (0-100): 100	Current Activity Level (0-100): 40
Total Projected Economic Losses For Years Not Worked: $216,464
Story: I became sick with ME 4 months prior to a 5-day backcountry hike of the Chilkoot Trail in Alaska.…

See Ann‘s story and her most impactful loss

Wobbly legs and ME

Name: Anna Marie	Years Ill: 21
Location: Huddersfield, England, UK
Former Occupation: Architectural technician
Current Occupation: Ventilation design engineer
Former Activity Level (0-100): 100	Current Activity Level (0-100): 70
Total Projected Economic Losses For Years Not Worked: £340,896
Story: About 25 years ago (in my mid 20s), I started getting unexplained fatigue and then age 30 I got "…

See Anna Marie‘s story and her most impactful loss

Not the life I expected

Name: Stéphanie	Years Ill: 8
Location: Saskatoon, Canada
Former Occupation: Assistant professor of physiotherapy
Former Activity Level (0-100): 100	Current Activity Level (0-100): 40
Total Projected Economic Losses For Years Not Worked: CA $465,720
Story: My story is simple. My CFS/ME started after my best friend was murdered by her ex-boyfriend and I…

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Nobody is Listening

Name: Dea	Years Ill: 28
Location: Charlotte, United States
Former Occupation: healthcare professional
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $526,253
Story: Approaching 40 years of age I was 114 lb endurance athlete in perfect shape and health. Super fl…

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Some recovery and a lot of determination

Name: Ishtar	Years Ill: 12
Location: Edinburgh, Scotland, UK
Former Occupation: Psychologist & Dance artist
Current Occupation: Psychologist in private practice, dance artist
Former Activity Level (0-100): 100	Current Activity Level (0-100): 70

Story: Prior to becoming ill, I had a rich and full life. I was part of a pain management team, I ran m…