Basic Stuff
- Name: Brie
- Country: United States
- State: Oregon
- City: Bend
- Gender: Female
- Age: 55
- Education: Masters Degree
- Primary Illness: ME/CFS
- Diagnosis:
- Chronic Fatigue Syndrome (ME/CFS)
- Fibromyalgia (FM)
- Irritable bowel syndrome
- Year Illness Began: 1991
Functioning Interrupted
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:
$70,000
- Yearly Income From Disability:
$18,000
-
Minimum Current Annual Income Loss:
$138,739
- Total Projected Economic Losses For Years Not Worked:
$2,051,715
Other Interruptions
- 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.
