Basic Stuff

  • Name: Steph
  • Country: United States
  • State: Indiana
  • City: Indianapolis
  • Gender: Female
  • Age: 42
  • Education: Jr. College
  • Primary Illness: Fibromyalgia (FM)
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Fibromyalgia (FM)
    • Neurally mediated hypotension
    • Migraine
    • Ehlers Danlos Syndrome (EDS)
  • Year Illness Began: 2011
  • Pursuing a bachelor’s degree in the United States when illness began: Yes
  • Year of college when illness began:

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: 50
(Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.)

Work Interrupted

  • Former Occupation: Respiratory Therapist
  • Job Responsibilities at Former Occupation:

    Taking care of critically sick children, mostly in Newborn ICU; occasionally Pediatric ICU.

  • Current Occupation: Respiratory Therapist
  • Current Job Responsibilities:

    In office education and pulmonary testing for a pediatric pulmonary office.

  • Years of Work Lost: 1
  • Current Work Status: Still working

Income Interrupted

  • Yearly Income Before Becoming Ill:

    $48,288

  • Current Yearly Income:

    $79,000

  • Minimum Current Annual Income Loss:

    +$14,192

Other Interruptions

Certified Disabled: Yes

Finances:
  • This illness has severely impacted my ability to financially prepare for retirement
  • I declared bankruptcy as a result of medical bills and/or loss of work
Education:
  • I missed significant time at primary and/or high school
  • I was unable to attend college/university as I had planned
Work:
  • I took on jobs with less responsibilities than I otherwise would have
Housing:
  • I lost my house or had to move to a smaller dwelling
Relationships:
  • I decided not to have children (or have more children)
  • I have been unable to or found it very difficult to date
  • I believe this illness contributed significantly to a divorce or loss of an important relationship

Most Impactful Loss

I’ve not been able to be the mother that I want to be for my child. When I first got sick, I needed to delegate most parenting tasks to friends and family just to get through the day and be able to provide for my child. I have made some improvements since, but still at reduced function in my life.

My Story

I had my daughter in 2010. My life changed immensely. I had this beautiful human to be responsible for and nurture. I threw myself into motherhood with everything I had. Unfortunately, my marriage did not survive. Partially, it was due to health issues of his, But more so due to health issues of mine. It started with a migraine aura, I had never had a migraine in my life. It quickly became massive amounts of testing and diagnoses, more questions than answers. Friends and family had to help me parent my child just so I could make it through work at a bare minimum since I was now a single mom. He died in 2012. I am now a solo parent and have done everything on my own. The pressure is immense. I don’t get breaks. I have regained quite a bit of function by learning to manage my conditions. For me, it’s essential to get enough sleep, eat, well, exercise, and minimize stress. That has helped me reduce my medications quite a bit. It is still difficult to juggle all of my responsibilities and maintain my current level of health. My list of diagnoses is now so long that I honestly forget several of them! I’ve missed out on so much due to my health. Professionally, I should be well ahead of where I am due to my strong experience in the field. It’s so hard to have to compete against people who are healthy. I cannot begin to imagine how much I have lost in my career due to health issues. I’ve also been very impacted as a mother. It breaks my heart when I tell my daughter that I’m tired or hurting and she tells me that I am always tired and hurting. She is the only reason that I get out of bed every day and struggle through another workday. She also struggles with multiple chronic health issues, so I have tried to be a good example for her, and help her maintain her health as well as possible. My doctor jokes that I am only still working because I am his most stubborn patient. It’s only partially a joke. Life is not easy, but we have made it this far! We are definitely still in the fight.



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