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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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work advice

Messages
8
Hi, I'm new here, and I'm wondering about people's experiences with work. I just graduated from college (which took a long time because of CFS), and am looking for jobs.

Finding work is hard enough because of the current economy, but what makes it especially hard for me are my limitations due to low energy levels. I’m not sure if I’ll be able to work full-time right now, and, if not, how much I will be able to work, which narrows down my choices and makes it hard for me to know what to say to employers.

Right now, my main question is for people who have searched for new jobs since becoming sick: If your CFS is going to affect your job, do you tell potential employers ahead of time about it, or do you wait until they hire you? And what has the reaction been in either case? Any other advice would also be appreciated. Thanks. :)

Matt
 

L'engle

moogle
Messages
3,278
Location
Canada
It can be awkward if you don't tell them, as they will then expect you to be able to react to stress and unexpected difficulties/overtime etc like a healthy person. Then, if you have trouble functioning, they may develop an opinion of you not being very competent, or having emotional problems. You could end up signing up for more than you are prepared for and then overstrain yourself. It's not easy to make these choices, but if you push too hard you may end up further limiting your ability to work in the future. Difficult though it is, I think it is better to be upfront about your illness.

you could try highlighting the positive elements of your abilities and needs, for example that despite your disability, you are keen to do what you are capable of. You could present it as a positive that you only need part-time hours, will cost less than other people and are more able to work independently. I guess then you will find out who is worth working for, for better or for worse!
 

laura

Senior Member
Messages
108
Location
Southern California
My experience with jobs: It's definately been a learning process, what I can and can't handle. I have had several jobs with the CFS. I never told them in advance. I have only told employers if/when it began to interfere with my work. When I first got sick I had to completely stop working. Later, I became more able to work. I changed jobs once because even though my employer was accomodating, I just wasn't able to perform up to the standard. It didn't feel good to be the lowest performing person there.

So I have figured out a few things that work for me:

1) Can I actually do the job? I have discovered a rigidly structured job with high performance expectations, eg having to meet billing quotas like lawyers, doesn't work. I just don't have that kind of consistent energy.

2) the more flexibility and autonomy, the better I am able to perform. Thus I can schedule my time and work to take avantage of higher energy times. For me this has meant starting later in the day and ending later (mornings are hard!).

3) A variety of tasks seems to be better because then when I am feeling fatigued in one area, eg cognitive fatigue, I can switch to another task.

4) Whatever the job is, you will have to do it long term. This is a marathon, not a sprint. So the energy required by the job really has to be within your energy envelope.

Hope this helps. Good luck!

Laura
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,188
Location
australia (brisbane)
personally i wouldnt tell them as not many people understand and u would be suprised how much u can hide from your fellow workers, theres a few of us who already do this. If u can get a job part time to start with would be ideal or a job where u can sort of pick your hours and work longer when feeling well and short days when feeling ill or take a day off and maybe make up on saturday. In saying that i was working part time and now back full time but have improved on antivirals, but i still take alot of precautions if i can and use premptive rest, i do rotating shift work, so if doing an afternoon shift starting at midday i make sure i sleep in or lounge around until i leave etc. and take the odd strategic sickie to lengthen my days off.

cheers!!!
 
Messages
97
Location
Philadelphia, PA
Think of it this way -- a pregnant woman has no legal responsibility to tell an employer if she's pregnant before being hired -- even if it means in the future she will have to take maternity leave.

That being said, I don't think you should tell them. I have had several employers, and I never mention CFS. To me, having a chronic illness is none of their business, as long as I am doing the job well. However, if I get too sick to continue functioning in my role - and my schedule has to be arranged accordingly -- then I tell them.

Just be careful you are not taking on any jobs you honestly cannot handle. Right now, I only work about 5 hours a week... I'd love to do more, but I know I won't do a good job, and my body/health can't handle it.
 
Messages
877
I usually do't tell anybody about my illness, it is just too impossible for the average eprson to comperhend. Heck it took my 25 years and being forced to quit work and I STILL DIDN'T GET IT! Once you get in you can just beomce part of the dysfunctional environment.

I had a cubilce job, and a job with alot of automony, which was great because I could come in and hide and pretend to work until I got enough energy to actually work. It was in front of the computer though and the EMF's eventually led to my complete crash. I think finding a job that is not high stress would be great for CFS'ers. and also one that is more results oriented instead of time oriented. I guess it is just a matter of who you are and what you are about.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
I don't think it is a good idea to tell them. I have mentioned it in the past and because of the name, people automatically assume that you are lazy, a hypochondriac and have "psychological problems." Even if you are working harder then others, there are some employees that will still make work hard for you by accusing you of not doing your job and even "telling" on you. I also have arthritis, so if other employees ask me why I am walking slow or limping, I tell them it is the arthritis. As a matter of fact, even if you don't have arthritis, if your questioned, I think it would be a good idea to blame it on arthritis. People believe that to be a "real" illness and they won't give you a hard time. I currently work a job where I am sitting down most of the time and I get time to walk around a bit. Perhaps starting out part-time and then seeing what you are capable of without pushing yourself too hard is a good idea. Someone else posted that it is important to figure out if you can do the job first. I would say most definately that is the key.
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Genki,

I like Mya's idea. Don' t tell them you have CFS, say you have arthritis or something that is recognisable & "fits" your slow movement or an image of less than normal ability.

Arthritis sounds like you can do a job, but covers you when you are slightly less able.

But I sympathise with you, because CFS is so unpredictable.

Perhaps aim for 2 afternoons a week (with some flexibility in hours). If that's easy, try for another part-time job as well.

If you can't do a full-time job properly after being hired, you lose your job & you have that on your work history.

If you've got 2 or more part-time jobs for completely different employers & you have to resign from one job, you've still got the other part-time job to keep you going & it shows you have ability to work (at all).

Even with the poor economy, there must be many employers who just want someone for a few hours & are willing to spread those hours over a couple of days. (although, if you had to pay a fair amount in public transport fares, going to a job for 2 hours each afternoon would waste alot of time & money).

The important thing is to acquire some reliable work history.

Here in Australia, I feel some young people get frustrated because they can't get a first job to gain experience, & they also can't get a job because they've got no work history to show how capable they are.

It's a catch 22 situation.

About 17 years ago when I was re-entering office work, I just wanted an easy job (so I could do some part-time study in the evenings on nutrition & alternative therapies). But I had a bit of trouble getting a simple, easy job because I was over-qualified & prospective employers thought I would get bored & wouldn't stay). So in this case scenario, I was over qualified.

The reality is that it's probably best to do something part-time until you get some idea of what you're capable of & how stable your health situation is.
 

L'engle

moogle
Messages
3,278
Location
Canada
Genki,


Perhaps aim for 2 afternoons a week (with some flexibility in hours). If that's easy, try for another part-time job as well.

If you can't do a full-time job properly after being hired, you lose your job & you have that on your work history.

I agree with Victoria. My post was thinking more in terms of full-time jobs. If you sign up for one and then can't keep up with the demands, it can be difficult. However, if you are doing part-time work where you feel you are more than likely able to appear normal, then not telling them may be the best option.
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
My advice would be

don't tell them in advance. Sign up for all the disability policies you can if offered trough work or independently. If you find you are unable to work because of your CFS you will have the disability policies as a safety net.
No employers want to hear you have an illness with fatigue in the title. It's just asking not to get hired.
 
Messages
65
Location
Australia
I absolutely agree with going easy, and I would strongly suggest aiming for (many?) less hours than you think you can handle. So even if you feel a bit silly and unproductive on your good weeks, you'll still be able to handle the job on your bad weeks.

I've had 2 desk jobs at ~20 hours a week. I was able to handle them while I was pretty much devoting my life to them and just coming home to rest in bed. However once I tried to actually have a social life (God forbid!) and do other things in my week it all fell apart, and I ultimately had to quit both due to relapses. If you're anything like me, the problem comes when you start to deteriorate, but you really need a whole week to rest and recover, which you don't feel like you can ask for, especially as a new and young employee, so you just keep going to work everyday anyway. Once you started down that path, there's pretty much no going back, and you can need months to recover at the end (it took me 9 months, and 2 months to recover from my job relapses, in addition to 2+ months of being on the edge of relapsing).

In regards to telling your employers about CFS in advance, I've actually had one good experience with telling at the job interview, and no bad. In fact, the only job interview at which I told them (out of 3 or 4) ended up being the job I got! I have a feeling I ended up coming across as closed and secretive in the other interviews as they specifically asked me why I was wanting to working part time, and I politely declined to answer.

For the job that I got after telling, I think the triviality of the name CFS actually helped me and gave the illness less weight, ie they didn't realise what an impact it has had on me. So in response to "why are you looking to work part time?" I said with a smile and with conviction that I was "recovering from" Chronic Fatigue Syndrome, and that it wouldn't affect me within a part time scenario, "It's not a problem, within those hours I'm go go go." Also that they didn't have to pay me for lunch break if I only work part days, which one interviewer thought was funny.

The other job that I had continued on from a part-time university placement, so my employer had no choice about allowing me to work part time during the placement, but then he saw that I was still able to work well within those hours, and was happy to hire me afterwards (as is relatively traditional in my field, and in my city).
 
Messages
8
I didn't tell them anything at the interview, but when she was planning my schedule I said something vague about recovering from an illness to explain why I wanted shorter hours. It worked out well.
 
Messages
57
Location
Seattle area
I came across this some time ago and I think it makes a lot of sense about returning to work.

http://fm-cfs.ca/QAStein.html

About half way down, there is the question:

"Could you offer some guidelines as to when someone with CFS should consider returning to part or full-time work?"

Wish I knew more about her - this article really makes a lot of sense to me.

But if you want to work 3 hrs a day, you have to have the energy for 6 plus good support with the rest of the stuff in life.

What's really the key to me is - how can you do with multi-tasking? My own multi-tasking ability is almost non-existant ... and I couldn't function at all in a work environment.
 

zoe.a.m.

Senior Member
Messages
368
Location
Olympic Peninsula, Washington
I came across this some time ago and I think it makes a lot of sense about returning to work.

http://fm-cfs.ca/QAStein.html

paclabman, do you think you could re-check the link? I can't get it to display a page. I have an SSD hearing tomorrow and your description of the article sounds like really good info for me to have in terms of why I can't work... I'm sorry it took me a week to find the post! Thanks.
 
Messages
57
Location
Seattle area
Looks like the link is broken now. I did a search to see if i could find a similar reference from her - and I didn't fine one. The info was from Dr Eleanor Stein, a Canadian psychiatrist and ME/CFS researcher.
 
Messages
44
Location
UK
This is an interesting one - whether to tell an employer about your condition or not. I am self employed, and I decided it shouldn't matter as long as I am able to complete the job in good time and in a quality I am happy with. I have been diagnosed with ME for nearly three years, and I haven't had too much trouble with work because the flexibility of being a sole trader means I can rest when I need to. All until a couple of weeks ago, when I did a job for someone and was happy that it was a good job. A week later I was recalled because it wasn't up to scratch -when I saw it I was shocked that I had ever let it go in the first place. I am now having quite a bad relapse, and I had done the work while I was under the weather. I've worked like that hundreds of times before, but I am obviously now considerably more cognitively and physically affected than I had realised.

The trouble with ME / CFS is that symptoms change and fluctuate in their intensity. My advice would be to try and be aware of your changing abilities and circumstances and don't let yourself run when you need to walk, don't end up feeling that you owe the employer, giving yourself unnecessary stress. And whatever you do, don't go self-employed in a marriage where you are the sole earner! I know that from personal experience! ha ha
 
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