Lives Interrupted: the Hidden Costs of Having a Neglected Illness

Please wait while the map is loading…

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.

Tell Your Story!

View Stories by Country

Stories

Nursing Myself

Name: Alison Wiltbank	Years Ill: 32
Location: Ocala, United States
Former Occupation: Part time RN
Former Activity Level (0-100): 100	Current Activity Level (0-100): 40
Total Projected Economic Losses For Years Not Worked: $382,347
Story: I have lived a long unhealthy life so I’m going to condense into Timelines for travel, disease …

See Alison Wiltbank‘s story and her most impactful loss

Lost in Time

Name: Bryan	Years Ill: 22
Location: Huntsville, United States
Former Occupation: Family Physician
Former Activity Level (0-100): 100	Current Activity Level (0-100): 50
Total Projected Economic Losses For Years Not Worked: $3,660,079
Story: Prior to my illness, I was a very active, very successful member of my community. I was seeing 3…

See Bryan‘s story and his most impactful loss

Searching for answers/Learning acceptance

Name: Leslie Fellows	Years Ill: 9
Location: Santa Cruz, United States
Former Occupation: Winery owner/export director
Current Occupation: Very part-time desk work for our family winery
Former Activity Level (0-100): 100	Current Activity Level (0-100): 60
Total Projected Economic Losses For Years Not Worked: $161,978
Story: I started getting sick 10 years ago. Before that I was an active and energetic person attending a…

See Leslie Fellows‘s story and her most impactful loss

M.E STOPPED MY LIFE

Name: Mary	Years Ill: 2
Location: Abingdon, England, UK
Former Occupation: Professional Dog Trainer
Former Activity Level (0-100): 80	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: £27,864
Story: At the age of 6 I got shingles, then throughout my childhood I had repeated bouts of Tonsillitis,…

See Mary‘s story and her most impactful loss

Everything is Gone

Name: Lavenderblue	Years Ill: 3
Location: Little Rock, United States
Former Occupation: Registered Nurse
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $305,609
Story: At first I thought it was just taking a long time to recover. I took it easy for a bit. It never …

See Lavenderblue ‘s story and her most impactful loss

A Broken Journey

Name: T-Rev	Years Ill: 8
Location: Bath, England, UK
Former Occupation: Christian Minister, Charities Director
Current Occupation: Christian Minister, Charity Director
Former Activity Level (0-100): 100	Current Activity Level (0-100): 40
Total Projected Economic Losses For Years Not Worked: £155,054
Story: I was living my best life, a high output, high energy, do-gooder. Able to travel and work in some…

See T-Rev ‘s story and his most impactful loss

Debilitated

Name: MD	Years Ill: 6
Location: Vancouver, Canada
Former Occupation: Family Physician
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: CA $1,542,301
Story: Got a severe nasopharyngeal MRSA infection from work in 2017 which went misdiagnosed and untreate…

See MD‘s story and her most impactful loss

30 of 33 years gone

Name: Duckcove	Years Ill: 33
Location: North Kingstown, United States
Former Occupation: part time sailmaker, full time mom
Current Occupation: owner, part time custom marine canvas design
Former Activity Level (0-100): 100	Current Activity Level (0-100): 30

Story: At 5'2" I was a happy dynamo of energy. From healthy to bedridden with many haywire body sy…

See Duckcove‘s story and her most impactful loss

Patte’s Lyme Journey

Name: Patte Wood	Years Ill: 31
Location: Lexington, United States
Former Occupation: Administrative Director, Center for Computer Research in Music and Acoustics, Stanford University
Former Activity Level (0-100): 100	Current Activity Level (0-100): 60
Total Projected Economic Losses For Years Not Worked: $879,056

See Patte Wood‘s story and her most impactful loss

Living life on a 2 inch bungee cord

Name: Diane	Years Ill: 32
Location: Waltham, United States
Former Occupation: Software Project Manager/Internationalization Specialist
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $3,009,929

See Diane‘s story and her most impactful loss

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…

See Stéphanie‘s story and her most impactful loss

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…

See Dea‘s story and her most impactful loss

A Rocky Road

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): 50
Total Projected Economic Losses For Years Not Worked: £119,777
Story: Prior to becoming ill, I had a rich and full life. I was part of a pain management team, I ran m…

See Ishtar‘s story and her most impactful loss

This disease has taken 32 yrs. of my life

Name: Brie	Years Ill: 32
Location: Bend, United States
Former Occupation: Counselor
Former Activity Level (0-100): 100	Current Activity Level (0-100): 40
Total Projected Economic Losses For Years Not Worked: $2,051,715
Story: I was a Nationally awarded swimmer, First chair musician, and worked hard in academics and my car…

See Brie‘s story and her most impactful loss

Never Better

Name: LauraB	Years Ill: 6
Location: Rock Stream, United States
Former Occupation: RN
Current Occupation: RN
Former Activity Level (0-100): 90	Current Activity Level (0-100): 40
Story: On the way home from work, I saw a cat hit by a car on a busy roadway. I pulled over, ran out li…

See LauraB‘s story and her most impactful loss

My adult life should have been just beginning. Instead it was forever stolen from me.

Name: Jo-Anne	Years Ill: 28
Location: Maidstone, England, UK
Former Occupation: Registered General Nurse
Former Activity Level (0-100): 100	Current Activity Level (0-100): 40
Total Projected Economic Losses For Years Not Worked: £199,564

See Jo-Anne‘s story and her most impactful loss

Career, family, fortune, friendships, reputation wrecked at 34y

Name: Remembrance	Years Ill: 33
Location: Manchester, England, UK
Former Occupation: Research Scientist
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20

See Remembrance‘s story and her most impactful loss

Fibromyalgia For 2/3 of My Life

Name: Emily	Years Ill: 21
Location: Willingboro, United States
Former Occupation: None (was 15)
Current Occupation: Medical writer
Former Activity Level (0-100): 100	Current Activity Level (0-100): 60
Story: I was always sick as a child with different kinds of infections (respiratory infections started a…

See Emily‘s story and her most impactful loss

Losing a life of science.

Name: Christyne Bliton	Years Ill: 17
Location: East Lansing, United States
Former Occupation: Bioengineer
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $1,631,171
Story: I was managing a national bioinformatics project at University of Michigan when I got sick with a…

See Christyne Bliton‘s story and her most impactful loss

A full and promising life redefined by chronic illness

Name: Drew	Years Ill: 5
Location: Los Angeles, United States
Former Occupation: team director at early stage tech startup
Former Activity Level (0-100): 100	Current Activity Level (0-100): 40
Total Projected Economic Losses For Years Not Worked: $161,181
Story: I was working to get some diagnosed digestive issues under control (SIBO- symptoms were nausea, c…

See Drew‘s story and his most impactful loss

CFIDS & My Disability

Name: Dave	Years Ill: 25
Location: Milan, United States
Former Occupation: Teacher
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $660,040
Story: By the way, currently, I am 1/2 the man I used to be -- 260lbs when I got sick, and now down to 1…

See Dave‘s story and his most impactful loss

Physical therapist assistant with Non-rehabable illness

Name: Anna	Years Ill: 6
Location: Saint Paul, United States
Former Occupation: Physical Therapist Assistant
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $122,116
Story: I became ill right as I graduated from a Physical Therapy Assistant program (2017). I remember th…

See Anna‘s story and her most impactful loss

Loooong Covid

Name: Elizabeth	Years Ill: 3
Location: Wolfville, Canada
Former Occupation: Retired
Former Activity Level (0-100): 100	Current Activity Level (0-100): 30

Story: In early March 2020 I became ill but for a while continued with winter hiking, thinking this was …

See Elizabeth‘s story and her most impactful loss

From caregiver to patient

Name: Lynn R	Years Ill: 17
Location: Vacaville, United States
Former Occupation: Registered Nurse
Former Activity Level (0-100): 100	Current Activity Level (0-100): 30
Total Projected Economic Losses For Years Not Worked: $1,837,602

See Lynn R‘s story and her most impactful loss

Once on track to becoming CEO

Name: Amy S.	Years Ill: 3
Location: Cortlandt Manor, United States
Former Occupation: Chief Program Officer
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $171,707
Story: I became symptomatic with COVID-19 on March 25, 2020; it started with shortness of breath, and fo…

See Amy S.‘s story and her most impactful loss

Cancer and ME

Name: Suzie B	Years Ill: 4
Location: Vancouver, Canada
Former Occupation: Film Production/Location Management
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20

Story: I developed ME after my first chemotherapy, immunotherapy treatment and radiotherapy for stage 4 …

See Suzie B‘s story and her most impactful loss

Lyme+ to ME

Name: Mima	Years Ill: 7
Location: Phoenix, United States
Former Occupation: Law Enforcement Detective
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $225,913
Story: In 1998 I travel to Phoenix, Arizona, where I was provided a full doctoral scholarship to study m…

See Mima ‘s story and her most impactful loss

A long slog

Name: Cparks	Years Ill: 28
Location: Los Angeles, United States
Former Occupation: Science teacher
Former Activity Level (0-100): 100	Current Activity Level (0-100): 30
Story: I believe my ME/CFS started with a 20 month active EB infection when I was 19-21yo. I recovered t…

See Cparks‘s story and her most impactful loss

Long ago in a distant place…

Name: Cort	Years Ill: 42
Location: Henderson, United States
Former Occupation: Student
Current Occupation: Owner of Health Rising
Former Activity Level (0-100): 100	Current Activity Level (0-100): 50
Total Projected Economic Losses For Years Not Worked: $783,738
Story: Long ago and pretty far away I was an athletic student running through the redwood forests on the…