How many years before you had to quit work?

[godlovesatrier]

I wanted to create a poll to see those still working with ME which I realise is tricky to quantify based on the poll response and then how long it was before people had to quit full time work.

This is just for my own community interest as an ME patient it is not research

Thanks,

 

[ChrisD]

I managed to continue in work whilst I had what I would describe more as CFS/Fibro (Lyme) but when I got ME at the end of that year I had to quit immediately as I couldn’t move

 

[MEPatient345]

I think you should have an iption for immediately, weeks and months. It was 3 months for me to stop working completely, but I couldn’t work full time immediately.

 

[godlovesatrier]

Thanks Silencio I have added.

 

[JadeD]

Hopefully you’ll see a pattern in the poll which demonstrates acute vs gradual onset. Mine was gradual so it took 10 years to go from very mild to severe where I had no choice but to give up work for a year. Now moderate and severe some days so can do limited work at home as long as I don’t move!

 

[Remi]

I have always been ill and managed school and uni with breaks, but never worked full time.

 

[PatJ]

I had my first ME/CFS episode/crash/emergence in 2003. That's when the weird flu-like symptoms started and my energy level was cut by 50% permanently. I started working part time in 2004 or 2005. I wasn't fit for work by 2007 -- too much brainfog and too little mental and physical energy.

 

[Seven7]

interesting, looking like it will be a bell curve.

 

[geraldt52]

Hopefully you’ll see a pattern in the poll which demonstrates acute vs gradual onset...

I don't think that the poll will show that, because I don't think that onset necessarily says anything about severity. I was definitely rapid onset, but it took about 15 years before I had to completely quit work. Without question I was sick during all those years, sometimes very sick, often living a life consisting of nothing but going to work and then resting to try to recover enough to do it all over again.

My severity level was a slow grind down to being unable to work at all, but the onset was rapid and extremely clear.

 

[JadeD]

I don't think that the poll will show that, because I don't think that onset necessarily says anything about severity.

A very valid point. Of course you can have acute onset with any variation of severity at which point you either plateau, fluctuate or gradually decline. I guess the opposite can happen too.

There’s so many different patterns to the illness which will directly affect ability to work. Everyone’s pattern is unique, but it would be nice if we could ascertain common themes. Maybe it’s all about subgrouping, who knows.

 

[Likaloha]

Also think maybe the cause of the cfs/me , if it is known, like mine most probably is, may have something to do with ability to keep working... Also maybe the type of job may be a variable because I taught very, very severely disabled children and I did a lot of lifting and carrying them around and my illness plus the safety of my students became a factor. I tried to work for a while with less disabled children but couldn't even handle that.

 

[Judee]

I'm like @geraldt52. I worked for many years ill. I was able to stay at my last job for 16.5 years but they let me start at 32 hours per week and considered it full-time. Even that was difficult though.

At some point they started letting people work from home (hallelujah!!) and I opted into that otherwise I would have had to quit about 3 years into it. Working from home was still really tough though but still much easier.

I didn't vote in the survey because I didn't know how to quantify all that. Especially since 32 hours to some isn't considered full-time.

 

[godlovesatrier]

@Judee What age did you get ill and then quit work at Judee?

Thanks for all these replies. I've realised now I'll probably end up unable to work eventually. Saying that I met a nurse the other day who worked part time for quite a few years, never had to quit and in her sixties is still working. So the severity can be far less limiting. Of course these people are not generally on forums and they don't seek out support groups because they can cope with their symptoms, so we haven't got a clue who is mildly sick in society, I suspect it's millions again on top of those we know about who are severely ill.

 

[gregh286]

I had to leave work for 4 years.
I'm back 6 months now full time.

 

[nyanko_the_sane]

I was stopped in my tracks for a number of months. Went back to work full-time, got worse a few years later, worked only part-time. I got worse again, this is when the pain kicked in, now I can't work at all.

 

[Rebeccare]

I became sick during college, so I never worked full time. But during my final semester, when my ME/CFS returned after about a year of remission, I had to student teach full time and attend classes in the evening. Had I been a professional teacher, I would have completed the school year but I can't imagine that I would have returned to full time work the following year.

I worked very part time for the year following my graduation with the intention of taking just a year off to get my medical issue under control before going to work full time, but that never happened. I have been working half-time, mostly from home, for 10 years since then.

I wonder: how many people leave full-time work believing that it would be just a temporary absence or a temporary lessening of hours, as I did? And how does that number compare with people who know for sure that they are leaving full time work (in the absence of a medical miracle).

 

[nyanko_the_sane]

I wonder: how many people leave full-time work believing that it would be just a temporary absence or a temporary lessening of hours, as I did? And how does that number compare with people who know for sure that they are leaving full time work (in the absence of a medical miracle).

I had not a clue of what I was up against until a few years ago. So I kept trying to move on, but I found it harder and harder to work.

 

[Joly]

I was only 14 when I was diagnosed with M.E after a year of being very ill. I barely managed to finish school, and never went to Uni. I've worked occasional part-time jobs but never managed long before a crash would force me to quit. I think my record was six months. My last attempt at holding down a conventional job was in 2012, then I tried freelance but couldn't keep it up. Haven't been able to work at all for the past 5 years.

Maybe add an option for 'Illness Onset Before Working Age' or similar?

 

[godlovesatrier]

I was only 14 when I was diagnosed with M.E after a year of being very ill. I barely managed to finish school, and never went to Uni. I've worked occasional part-time jobs but never managed long before a crash would force me to quit. I think my record was six months. My last attempt at holding down a conventional job was in 2012, then I tried freelance but couldn't keep it up. Haven't been able to work at all for the past 5 years.

Maybe add an option for 'Illness Onset Before Working Age' or similar?

Added Thank you @Joly

 

[Judee]

What age did you get ill and then quit work at Judee?

@godlovesatrier, I actually got mono at 13 years old. I was so sick in my teens that I ended up missing 52 days in one year of school alone so had to finish by homeschooling. I ended up going on SSDI in my 20's but still tried to take care of my sister's kids for 2 days a week. That was all I could manage.

As they were getting older, I tried small jobs along the way but again all part-time.

Unfortunately, because I was trying to work, I lost my SSDI and ended up needing to get something more. Hence, I got the 32 hour job but from the start it was very difficult. I think that finally getting to work from home was the only way I could manage and even that was very hard.

Hope this helps.