Have you had periods of being able to work?

[Never Give Up]

What kind of work did you do?

What kind of work would you recommend a young PWME prepare to do?

What did you say about your ability to work during job interviews, and why? How did it work out?

How did you handle the need to be absent from work?

 

[Snow Leopard]

No.

 

[Never Give Up]

No.

 

[Jesse2233]

I think it really depends on the person

 

[Sushi]

Yes, I worked most of the time I was sick then but I had no idea what was wrong or that I was making my condition worse. But I had to rest every evening and weekend, take all my sick leave and even take periods of unpaid leave. I was obviously at a mild stage then.

What kind of work did you do?

All sorts--from drafting to teaching, to editing.

What kind of work would you recommend a young PWME prepare to do?

Something sedentary that would accommodate flexi-hours or working from home if necessary.

What did you say about your ability to work during job interviews, and why? How did it work out?

Since all the doctors I had seen told me I was fine, no problems, health never came up in job interviews.

How did you handle the need to be absent from work?

Sick leave, unpaid leave and then would quit when all that ran out.

 

[Hell...Hath...No...Fury..]

Only tried voluntary work about 10 years ago, and that was only 1-2 afternoons per week... Only managed 3 weeks in a row before the crash though.

I then tried to do voluntary work again a year later, working at a drop in centre and needle exchange for people with HIV but they didn't want someone with ME helping them in case I made them ill lol.

Ever since it has been singular one off events, along the lines of homeless soup kitchens; knowing full well i can't keep doing things every week and maintain it.

Its so difficult recommending types of work to prepare for because it depends on your symptoms and severity and ability to repeat things either daily or weekly.

Working from home would always be the ideal but then you lose the social aspect if you need this.

Sitting at a desk might be helpful if the chair isn't painful and the environment (lights, noises, smells, people) aren't too assaulting to the body.

Maybe start by volunteering first, to test your stamina and social stamina. If theres any ME groups locally, see if they need any help in the office, or with newsletters or answering the phone. They're the best people to test yourself on as they understand. If it goes well, you can use this to demonstrate to employers that you're capable of certain tasks etc. and they'll give you a reference.

ME is still widely unrecognised, and this can be used to your advantage when explaining yourself to employers, especially if its mild and its not as obvious.

You could try working in a charity shop starting with an hour or two a week, volunteering to begin with.

Its so difficult because of fluctuations. You maybe be capable of doing something one month then nothing for the next 3.

For me personally, i've just done many courses over the years from college to open uni, most of them at home. So i now have a collection of qualifications for if/when I can work again.

Explaining the need to be absent... I'm not sure about. Back when i worked, its not something i ever sucessfully managed to achieve without being threatened with losing my job. I'd think flexi time is the best option but i don't know how easy it is to get this these days.

There is so much pressure on healthy people now struggling to keep their jobs when competition is so fierce. I could imagine showing any form of weakness could make our job security even more unstable.

If there's anything you enjoy doing as a hobby, is there a way to convert it into a paid income? Being your own boss although hard work suits a lot of people with ME and is sometimes the only way.

Its just really difficult to advise when each person is so different. I hope you're able to test the waters somehow first before making any big comittments. See if you can repeat something weekly first and build from there.

Good luck with whatever you decide to try

 

[Oberon]

What kind of work did you do?
Process Improvement. Review a task, or method of doing things and figure out how to use technology to make it more efficient. I am still working however I fluctuate from full-time to 3 days a week to out of work depending on how bad I am. I've had CFS for 4-5 years, and have steadily gotten worse each year and I don't think continuing to work has necessarily helped with that.

What kind of work would you recommend a young PWME prepare to do?
Learn something that allows for remote work to give yourself more flexibility. There are some great online resources like Lynda.com which you can often get access for free through your local library that will teach you thinks like Graphic Design, CAD modeling, Computer Programming, etc.

I know it's easier said than done for PWME, but if you pace yourself and depending on how severe you are it is still possible. This will give you the option of possibly becoming self-employed doing freelance work which gives you much greater amounts of flexibility.

Finding a job that's work at home based is also an excellent option. They are much fewer but they do exist and there are job boards dedicated to it on the internet.

What did you say about your ability to work during job interviews, and why? How did it work out?
I have never gone through this personally, but as someone who has conducted many interviews, I would not disclose my CFS. While employers are not supposed to factor in disabilities in to their decisions they will irregardless of what's right and wrong. Please make sure you proof read your resume. I can't tell you how many times resumes go straight to the dumpster bin because the candidate did not take a few minutes to proof read their resume.

You can always discuss your disabilities if your ME/CFS flares up again and deal with it then. It's harder for smaller businesses to accommodate but many larger businesses have programs dedicated to accommodating disabilities and will try and work with you once you are employed by them so you may want to focus on working for a larger organization.

How did you handle the need to be absent from work?
I can't answer this one on a personal level as I work with family which gives me a certain level of security (this is a good and bad thing as while you have more stability, you also feel a sense of obligation to push yourself even when you probably shouldn't.)

What I would do is try to make myself valued enough by my employer that if I need to be absent for a period of time I could still work from home to complete priority tasks.

In my case I've made every effort to remove myself from most day to day activities and focus more on projects. If a project gets delayed by a few months because I'm ill it definitely sucks but it's not the end of the world and the business will still run. I'm sure this is easier said than done if working for a not so accommodating employer.

 

[Never Give Up]

Since all the doctors I had seen told me I was fine, no problems, health never came up in job interviews.

Well, at least something good came of that. How would you handle it today?

Sick leave, unpaid leave and then would quit when all that ran out.

Why did you quit as opposed to being fired?

 

[Never Give Up]

Great ideas, @Hell...Hath...No...Fury.. !

 

[Valentijn]

What did you say about your ability to work during job interviews, and why?

The general advice I've seen for illness or disability is to not disclose until you've got the job, unless your condition legally disqualifies you from the job (insulin-dependent diabetics can't be professional drivers in the UK, for example). It's extremely easy for employers to discriminate at the hiring phase, without giving indications that discrimination is the reason you weren't hired.

But once you're hired, you might need to disclose your condition to ensure you aren't penalized when it interferes with your ability to work as normal. Basically it isn't discrimination to punish someone for being late, missing work, etc, due to an illness or disability if the employer doesn't know you have it. This is also when you can discuss accommodations, such as keeping your feet elevated, scheduling of breaks and hours, etc.

Regarding absences, it's a good idea to know your limitations, and apply for positions which would suit it. Eg, if you can't work full time, accommodations laws might be tricky when it comes to turning that into a part-time job. It probably depends a lot on the relevant disability and employment laws.

 

[Ambrosia_angel]

Why did you quit as opposed to being fired?

For me, my employers treated me badly and tried to suggest that I was doing my own thing whilst on sick leave. So I quit. Going through the firing process can take a very long time. It's good for ESA but if you're under investigations or have a hard to understand illness like ME then it can be an issue for them.

 

[Ambrosia_angel]

@Never Give Up
What kind of work did you do?

What kind of work would you recommend a young PWME prepare to do?

I think the issue with young PWME compared to older people is that we may have interruptions in our education or we have limited work experience. So it's very hard for us to find job roles that aren't laborious like retail and hospitality where you're standing constantly.

I don't think there is any preparation that can be done. It depends on the severity of your ME. Try voluntary roles first as they'll be able to adapt to your needs more plus you shouldn't have any issues mentioning your limitations.

What did you say about your ability to work during job interviews, and why? How did it work out?

You'll nearly always have to mention your gaps on your CV anyway so they may inevitably ask you what your ability is anyway. Best to say that you're 100% better. If you say that you're currently ill then you probably won't get the job.

Imo don't expect adaptions from your workplace especially if you're going into low skilled jobs. If you feel it necessarily to mention your ability in case it affects your work then the job might not be for you. Don't put yourself in a position where a job could drain you out. what sort of job are you looking for?

How did you handle the need to be absent from work?
You don't lol. Most employers don't like it. The only way you may be able to get away with taking an illness-related absence and them being understanding is if you have an easy to understand situation like cancer or an accident. If you work in the public sector then they have to follow a protocol anyway they can still be quite unsympathetic.

Like I said it's best to try and avoid a job which could drain you and possibly put you in a situation of having to take frequent absences.

 

[Manganus]

During the most time, I've preferred to work on different kinds of temporary contracts. That way I had maximal ability to recuperate, when needed, without having to discuss my health with supervisors. Since I had no usable diagnoses there wasn't that much to disclose or hide during interviews.

Basically, I've adjusted ("downwards") during a 30 years period.

University level studies were a dead end I had to reverse out of. I actually tried in several fields. That was disheartening.

Initially, after that, I was self-employed (in the propaganda industry). I'm not quite sure why I gave up on that. It's a very long time ago.

Then, for some years, I managed to work as stand-in for registered nurses (as did some others of us having completed only a part of medical training for physicians). I didn't earn (much) less than I had before, but I appreciated working in health care. Doing good for others is good for one self!

After a few years, I couldn't stand the stress, and changed to working as assistant nurse. (Earning less, for sure.)

Then I discovered that I came more to my rights as a psychiatric aide, and I returned in 2000 to a psychiatric station where I was well known as a "regular stand in" since the 1980s (as an aide). When that station was abolished, almost ten years later, I found no new place to work. By then I was too ill, unfortunately.

 

[boombachi]

@Never Give Up, @Valentijn hit the mark with everthing she said and there has been some good advice on this thread already. In the UK an employer cannot ask you about your health prior to offering you a job unless it relates to specific requirements of the job like shift work or heavy lifting. Once a job offer has been made you should complete a health declaration form and you will need to speak to the occupational health department if anything comes up on it. If you don't declare a health issue you have no protection under disability discrimination law and could be sacked if it comes out that you lied.

I have worked in supported employment services and in my experience most employers stay within the law but some are still ignorant. Larger companies tend to be better than smaller independent employers on the whole (but mostly depends on the individual) and in the uk where I am, charities, local authorities and health organisations seem to have the best policies but it always comes down to how disability aware your boss is. Joining a union can help if there are disputes.

If you are off sick a lot, the job is not right for you. Again you will find a large employer can absorb this better than a small independant. Also think about the kind of work you are doing. If you are working as a carer and call in sick, someone else will have to cover for you and your colleagues will soon get fed up if it happens regularly. If you work in an office the impact is completely different.

In terms of what kind of work, I have worked throughout my illness and have found it helful to have a job where I can sit down a lot. Although I work with people, I am not constantly interacting which I find exhausting after a while. I keep my days to 6 hours and don't work every day.

I have a very good attendance record. This is mainly because I stick within certain limits and I have always had supportive employers. I know not everyone is so lucky.

Someone above suggested voluntary work. This is a really good way to test how you will cope and is a good way to get a reference and put experience on your cv. Employers won't mind gaps in employment due to illness if there is recent experience that shows you are coping now.

I wish you luck with this. Although it is hard to maintain work when you are ill, I appreciate the benefits of human interaction and the quality of life I get from it.

 

[Never Give Up]

The general advice I've seen for illness or disability is to not disclose until you've got the job, unless your condition legally disqualifies you from the job (insulin-dependent diabetics can't be professional drivers in the UK, for example). It's extremely easy for employers to discriminate at the hiring phase, without giving indications that discrimination is the reason you weren't hired.

But once you're hired, you might need to disclose your condition to ensure you aren't penalized when it interferes with your ability to work as normal. Basically it isn't discrimination to punish someone for being late, missing work, etc, due to an illness or disability if the employer doesn't know you have it. This is also when you can discuss accommodations, such as keeping your feet elevated, scheduling of breaks and hours, etc.

Regarding absences, it's a good idea to know your limitations, and apply for positions which would suit it. Eg, if you can't work full time, accommodations laws might be tricky when it comes to turning that into a part-time job. It probably depends a lot on the relevant disability and employment laws.

As an employer I always ask if the person is capable of doing what the job requires, be that lifting 50lb.'s, working long hours for extended periods of time, etc. I learned to do this while working for large employers. I assume others do this as well. An employer needs to know if a person can do what they are hiring him to do.

I assume that my son would be asked those same questions. If he answers honestly he might not get the job. If he pretends to be fully capable of keeping pace with healthy people the employer is likely to feel duped and angry at not getting what he thought he was hiring. I know I would feel that way. I'd also be angry that I'd let other job candidates slip away and would now have to start over with recruiting, screening, interviewing, and wooing candidates.

My mind is drawing a blank on how to finesse this situation.

He wants to apply for a job, but it requires a 10 hour/week commitment, I believe that is part of the employment agreement. I don't think he can do it once school starts up again.

 

[Hutan]

My mind is drawing a blank on how to finesse this situation.

As you know, I am in a similar position as you NGU, with respect to having a son with ME. And I certainly don't practice what I preach very well at all, but maybe it's not your situation to finesse?

I mean, we want the absolute best for our sons, we want them to be safe and we want everyone to understand just how lovely and responsible and brave they are. But they are getting to the age where it's good if they make their own decisions.

My son does work experience for a day a week and he hasn't told them he is sick. Yes, it's volunteering but they are spending time with him, teaching him skills he needs for his course. What they think about his patchy attendance I do not know, but if I was his boss, I'd probably wonder about his commitment sometimes. There have been times when I have been tempted to ring his boss and explain for him. And certainly I've tried to tell my son that things would be better if he just let them know he has a health condition. But he disagrees.

If your son applies for the job and doesn't get it, well it's still been an experience, maybe a useful one.

If your son gets the job and then finds it is too hard later and quits, what his employer thinks probably doesn't matter all that much. I left clients in the lurch when I couldn't keep working and I was mortified. But life goes on. If your son burns his bridges with this employer, there will be others.

It's great to hear that your son is well enough to even be contemplating working.

 

[Never Give Up]

I love the suggestions to test the waters while gaining experience as a volunteer. I think that would work perfectly for my son right now.

 

[Never Give Up]

I agree that it is not my position to finesse this for him. I do think it is my job to try to help him anticipate and address the work related complications that arise from his poor health. That's why I'm asking these questions here of those who've lived it.

 

[boombachi]

My mind is drawing a blank on how to finesse this situation.

If the job is manageable then your son won't need to lie about it in the interview. He also does not need to mention being ill until after a job offer and sometimes only to the occupational health nurse. The health condition does not need to be disclsed to his boss, just the adjustments that his boss needs to comply with. As I said before, some employers have great procedures in place. Some don't.

What country do you live in? In Uk there are various disability organisations that support people back to work and some local authorities provide this for young people too. They should help your son identify what kind of work is manageable and arrange work experience and should also be able to advise him of his rights at work.

One thing to be aware of is that government contractors whoose job it is to get people off benefits are results driven and tend to put people on courses to get an outcome rather than tailoring the advice. They can be helpful but be aware.

 

[Ambrosia_angel]

@Never Give Up

I have to agree with @Hutan. I was diagnosed with ME is a teen and my education and social life was horribly interrupted and still is how many years later.

My mum is very protective over my health even though I'm now an adult. She's the type that would tell me to tell my employer. The first job interview I went to I told my employer that I'd struggle at carrying heavy items but the job was in a supermarket and you have to carry crates. I didn't get the job.

I don't think you should care about the employer feeling duped. Competition for jobs where I live is extremely high so I've learnt that it's kind of necessary to dupe employers if you want to get a job.

An employer doesn't need to know about his current health nor do I recommend telling after he's got the job. If he has gaps I his CV then kindly explain past health issues and that you're better now. It's very easy to disclose if you have lots of experience and in demand skills or are working in the public sector but at local restaurants and retail spots, employees are disposable. They have such a high turnover of staff. That's why I do disagree with some of the comments about mentioning health after the interview.

Only mention health if he's unwell and can't work. The employer can't dispute this.

My advice is he should get as many references as possible. He can quit once school starts! I did that with my first job. Most employers know that a handful of people will leave at that point due to school commitments. And try to avoid taking sick leave. If you think he might have to take sick leave then he isn't ready to work and should just stick to volunteering. It's just as fun which is what I did first. It was hard at first but I eased my way into into.