Basic Stuff

  • Name: Brie
  • Country: United States
  • State: Oregon
  • City: Bend
  • Gender: Female
  • Age: 55
  • Education: Masters Degree
  • Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Fibromyalgia (FM)
    • Irritable bowel syndrome
  • Year Illness Began: 1991

Functioning Interrupted

Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 40
(Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day, but requires rest periods.)

Work Interrupted

  • Former Occupation: Counselor
  • Job Responsibilities at Former Occupation:

    F/T counselor

  • Years of Work Lost: 16
  • Current Work Status: On disability

Income Interrupted

  • Yearly Income Before Becoming Ill:


  • Yearly Income From Disability:


  • Minimum Current Annual Income Loss:


  • Total Projected Economic Losses For Years Not Worked:


Other Interruptions

Certified Disabled: Yes

  • This illness has severely impacted my ability to financially prepare for retirement
  • I reduced my work hours
  • I left my job or retired early
  • I lost my house or had to move to a smaller dwelling
  • I believe this illness contributed significantly to a divorce or loss of an important relationship

Most Impactful Loss

I lost the ability to be athletic, enjoy extracurricular activities, work F/T, and have meaningful relationships. I balanced my life with this disease for years, but lost my home, spouse, and job in 2014, when the disease progressed unexpectedly. I was house bound, and bedridden most of the time.

My Story

I was a Nationally awarded swimmer, First chair musician, and worked hard in academics and my career. I had motivation and a strong work ethic from an early age, getting an early work permit when I was 14 yrs old. I went on to get a Bachelor’s degree, and Master’s in Counseling. The first year I became ill, I went on disability and slept on a friend’s couch. I couldn’t even hold a hair dryer for more than a few minutes. I saw doctors and naturopaths, tried food elimination diets, and supplements. I was diagnosed with CFS, but at that time most thought it was a psychological problem. After a year, I got better, and thought it was over. I wasn’t at the same level as prior to becoming ill, but was able to live my life. I had relapsing remitting symptoms, and learned to pace myself on my own. I thought this is how my life would be until they found a cure. I spent thousands of dollars on specialists, researched, and tried many “treatments “. I’ll never forget October 2014. This is when the disease progressed without warning. I had a two day neuropsychology eval that determined severe cognitive impairment. I had a two day CPET that showed that washing the dishes surpassed my threshold. I was housebound and mostly bedridden. I had to leave my job, lost my longtime spouse, and sold my sanctuary of a home. I lost everything, and would get lost just going to the grocery store nearby. Thankfully, I had long term disability insurance, and got SSD my first application. I was able to buy a small home and rest. However, the Disability Insurance stopped with no warning. I was in for a court battle I couldn’t win. The insurance company used their “experts” to determine that I didn’t have a real disease. Now I had added legal and financial stress. I was able to hire an attorney, and settled for a fraction of what they owed me. I started seeing a new specialist, who helped me regain some of my health and energy after 3 yrs on the couch. I can’t live on SSD income, so I returned to part time work. I’m only able to work 4 hrs per day, twice per week. However, working, and maintaining a home uses most of my energy . I’m not able to engage in many fun activities like hiking and kayaking. I’m not able to socialize much, so have few friends. I worry about ever being able to retire, as well as being homeless if I ever got “bad” again. This disease has robbed me of so much. The worst is not feeling like I can be honest about my disease, because there is still so much ignorance. I still have hope that eventually doctors and society will understand how debilitating ME is, and I look forward to treatments that help people regain their lives.

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