S6E14: When Surviving the Day is Mistaken for Being Able to Work
Summary: KatherineMarie shares how a workers’ compensation second-opinion review and a former employer’s account of her activities have shaken her confidence while living with Long COVID. She describes post-exertional malaise, the gap between appearing functional and sustaining work, and the emotional toll of disability assessments, while recognizing the long history of people with ME/CFS facing similar disbelief.
Keywords: Long COVID, ME/CFS, post-exertional malaise, workers compensation, disability, disability retirement, chronic illness
Key topics:
- A workers’ compensation second opinion is being arranged, and KatherineMarie worries about what records and statements the reviewing physician will receive.
- KatherineMarie says a former employer’s account made occasional activities sound routine, including riding an e-bike and swimming, while leaving out the exhaustion and recovery afterward.
- She explains that post-exertional malaise means a brief activity can cause severe symptoms and may require rest before and after.
- She contrasts workers’ compensation benefits, described as 75% of prior salary and untaxed, with disability retirement based on 40% of her highest-three-year average and subject to tax.
- KatherineMarie recounts trying to volunteer with children for about 45 minutes twice a week, then stopping when it became unsustainable after two or three weeks.
- She describes attending a soccer game and birthday party only with a nap, a mobility scooter, and hours of further rest, details she says were omitted from the account about her.
- She considers sending her workers’ compensation doctor the disputed letter and her written corrections so the doctor understands her concerns.
- She connects her experience of being disbelieved with the longstanding struggles of people with ME/CFS, and calls for research that benefits both communities.
Takeaways:
- Just because you can functionally do something doesn’t mean that you can sustain it.
- On a good day, you shouldn’t judge based on how you’re doing on a good day only because you have a lot of bad days.
- I never know what’s going to happen with my energy level for the day.
- I was able to do it for about two or three weeks, then on the third week, it started really becoming very difficult.
- I miss working.
- I feel ashamed that I’m on workers’ comp and not working because I’ve worked my whole life.
- I had to take a nap before the 45-minute soccer game, and I used a scooter to get to and from the soccer game from my car.
- They omit certain parts of the story so that it makes it sound like how they want it to sound.
- The ME/CFS people are like, ‘Hey, like I’ve been here for decades.’
- They don’t see the post-exertional malaise, the recovery prepping time, sleeping to prep.
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The medical/health information is provided for general informational and educational purposes only and is not a substitute for professional advice. Accordingly, before taking any actions based upon such information, we encourage you to consult with the appropriate professionals.
