Who Are We Without Our Jobs? — The Cut

Too brain-fried to read all the article, but loss of a career, or plans for a career, are one of many losses for pwME. I felt this acutely. I had a career, and plans for more university. Of course ME called a halt to this. I had to redefine myself and my self concept inspite of this huge life change.

When I was first off work, I was concerned others thought I was shirking. Family, friends, and colleagues didn't help with their frequent inquiries: "When are you going back to work?"
Their outright dismissal of my serious symptoms was, and is standard procedure, and also cruel. I wish I could say I got all those disbelievers on board with the reality of ME, but that was not the case. It was a rare individual who was open-minded enough to cut me some slack.
 
A few years ago, the last time I tried 'working' was to try launching a freelance editing service. My first client was someone who wanted me to 'proofread only' (funny, that) an impossibly badly written memoir.

He ended up enraged. And I worked, as it happened for about $3.15 per hour. He had sent a sample of a few paragraphs that were well written--the only ones that were. My forearms, hands, and upper body certainly didn't tolerate the work, and my use of pain meds escalated, which meant no, I couldn't do this type of work for the hours it required.

Recently I did volunteer to research for a relative whether Chinese-made KN95 masks could be sold to US healthcare providers. It was exciting (new! and newsworthy!) and totally exhausting. In a word, no, everyone and their uncle in China were manufacturing masks of dubious quality and you could be prosecuted for fraud in selling them here in the US.

Since having to quit my nursing job in 1999, I tried 3 other healthcare jobs, including one as a clinical research coordinator. I tried going back to school to become a nurse practitioner. I went through our state's vocational rehab program and tried bookkeeping.

All of these I couldn't do; my body was in the midst of a scream of pain all the time; I was so angry and exhausted at having to struggle until I gave up, or in.

I think an hour a day, in small chunks is my current limit.
 
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it took me 2 years post diagnosis of struggling to keep working part time.

I was lucky to be advised in a private consultation that pushing to work would be detrimental to my health going forward. This was so helpful in helping me to realise I needed to put my health above continuing to work.

I then had to fill in an application form for ill health retirement had to set out some details of how the illness affected my ability to work and unable to fulfil responsibilities of my job so that got me a lot of the way there relatively quickly.
 
How did you all feel when you received your first disability payment? The reality hit me right in the gut. On one hand I was relieved that I was approved, but on the other hand upset that I was now considered disabled. It was a weird feeling when I was in the prime of my life.
 
Mij said:
I feel liberated every time I hear someone trying to start their car in the freezing winter months.
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Yeah. Much as I loved driving an early, cold miserable early morning trip to work on Monday morning isn't something I miss.

The snag with not having the Monday morning feeling is that it also means I miss out on that Friday afternoon, weekend feeling. Often commonly referred to as Poet's Day. (P*ss *ff early it's the weekend).
 
Mixed.

I didn't even get to apply for it for well over a year. They kept insisting I wasn't entitled to it. So when I finally got it it certainly felt like a battle won.

Miserable. My parents would have been absolutely horrified to discover I was on benefits. It's a bit of a cultural thing but also I was the only one of my siblings to go to university.

Vulnerable. They can make you jump through all those hoops all over again at any time. I am at the mercy of the whims and biases of those who don't know much if anything about me, know even less about the disease I suffer from.

Naffed off. All that fuss and bother to make sure I'm not defrauding the system. Some simple checks would have told them that my annual bonus almost 25 years ago was larger than the total amount of benefit I receive in a year today. I paid more in tax per month (not including national insurance) than I now receive in benefit per month. Does it really make sense I'm trying to defraud the system for what would have been a very paltry sum?

I had far better battles to fight.
 
My application was rejected the first time around, the letter stated that I was 'capable of gainful employment'. I took it very personal and decided to call the judicator who determined that I was not disabled. She was a nurse, very pleasant on the phone, and admitted she knew nothing about CFS. Wow, just wow. She told me to appeal and that she would 'personally' look into my case.
 
Mij said:
I took it very personal and decided to call the judicator who determined that I was not disabled. She was a nurse, very pleasant on the phone, and admitted she knew nothing about CFS.
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I had a proper set to with the DWP during one of my assessments. They were really messing me about and doing their utmost to refuse a home assessment.

It went on for months, for every step forward a new obstacle was thrown up.
Finally, a quite nice human on the phone went to ask the doctor looking at my case who refused my request on the spot saying ME shouldn't disable me to the extent I couldn't go to their offices - naturally somewhere really awkward and challenging to get to.

I got annoyed and asked if I could speak to this individual directly. No. So I told her I was phoning my MP. They had a written letter from a doctor who understood ME, had treated me for years whereas their doctor knew nothing about me and, as far as I could tell ME.

Fair enough, she said. I completely agree with you! My jaw dropped and she asked me to wait. She came back and told me she'd relayed my message and the doctor changed their minds and I could have a home assessment after all!

Gobsmacked. On the one hand really grateful but in the other....months of needless messing about and trying to get through on the phone.

:banghead:
 
Invisible Woman said:
I got annoyed and asked if I could speak to this individual directly. No. So I told her I was phoning my MP. They had a written letter from a doctor who understood ME, had treated me for years whereas their doctor knew nothing about me and, as far as I could tell ME.
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I assumed my disability application/letter went in front of a board of doctors to determine my eligibility? :rolleyes: My letter was written by an ME clinician (co-authored the draft for CCC) with 20+ years experience and specialized in disability applications. Rejected. I was told that it wasn't unusual to be rejected the first time around, but still, it's felt like getting punched in the gut.
 
I had someone ask me- Is that you really can't work, or just that you're not able to find a job you can do that isn't beneath you? Slight paraphrasing but more or less that. The thing is they actually meant well and were genuinely trying to understand.

I pointed out that, although I had a scholarship grant that covered most of my costs as a student, it didn't cover everything and my parents couldn't afford to give me anything. So what I earned bought any new clothes and supplies I needed for the coming year plus topped up my grant.

So, every summer, I travelled to another country and stayed with my brother and worked one full time and one part time job. One summer I worked in a London fast food restaurant. Mostly I worked the "front" - tills and drinks etc. , but I did occasionally get the short straw and have to keep the loos clean on a Friday night shift. I think we can safely say I don't think any job is beneath me.

I can also honestly say that, in my experience, the lower the pay and status, the more physically demanding the job is & the more stamina you need. We got meals as part of the employment package at the fast food joint so I ate fast food virtually everyday. The weight still fell off me.
 
Mij said:
How did you all feel when you received your first disability payment? The reality hit me right in the gut. On one hand I was relieved that I was approved, but on the other hand upset that I was now considered disabled. It was a weird feeling when I was in the prime of my life.
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I can relate to the punch in the gut re the whole scenario. From the medical appointments, to tests, to people treating me like I was hugely contagious, to all the form filling, it was a nightmare I very much hoped to wake up from.
 
@Mij

When I was classified as permanently disabled, it felt brutal, as in forever, but the disability payments were necessary to keeping life and limb together. It was devastating to go from a young, healthy, active person's life to being side lined career- wise due to debilitating health issues.
 
Mij said:
How did you all feel when you received your first disability payment? The reality hit me right in the gut. On one hand I was relieved that I was approved, but on the other hand upset that I was now considered disabled. It was a weird feeling when I was in the prime of my life.
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in my case having to go to a benefits tribunal for esa (uk employment support allowance ) it was a case of you have won but also a kick in the teeth for all the things you have lost a very miserable experience .
 
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