The ME/CFS Society of NSW Inc.

Hey Elle,

Welcome to the forum This is a long one!... I've had CFS for about 7 years and I am now 28. Although I had some symptoms and reduced stamina since as early on as 17 or 18, the main onset of it (when my brain just stopped working altogether and I couldn't get out of bed for months) hit me when i was 23. I remember one day around that time, I had been lying in bed all day - not sleeping, not really resting, just aching and wondering what the weight was that seemed to be crushing me into my mattress. By late afternoon I thought 'this is crazy, I gotta move!'. I remember just sitting up in bed to get out, and was like 'wooooooow....what on earth is going on?' feeling like I had just been flattened by a truck, and collapsed back into the bed. I don't remember much of the year after that day, and whether that's me blocking out the bad memories purposely, or my naturally weak cfs memory who knows! But I am mostly happy to forget it! I didn't get my diagnosis until I was about 25.

Congratulations on finishing your school certificate equivalent despite the challenges cfs throws at you, any study accomplishment in a situation like that is a true achievement. As far as telling employers and colleagues, I think that really depends on the job itself, the workplace culture and whether telling them serves a real purpose to you or not. That's the main thing; is it going to help your situation or hinder it?

I'd say generally as a rule I would avoid it wherever possible, then down the track if you feel you really need to tell them for some reason you can. I'd say out of the 3 jobs I've had troubles with since CFS hit me, 2 of them would have been made easier in some ways by me telling my employer (maybe not straight up, but after time) about my cfs. But that was just luck - it just happened that with the first one the people were exceptionally great people to work with and my manager was really lovely, and it was a small close-knit team. I wasn't at my sickest yet and had nothing close to a diagnosis, but I think that had I actually been able to get a diagnosis at that time and know what was wrong with me, they would have been quite accepting and accomodating of my situation. Although who knows if I would have been considered for promotions and roles with more responsibility. But it would have actually made it easier in an immediate sense to be able to tell them that i wasn't lazy or unreliable and why - it would explain things that both me and my manager really struggled to make do with - why I was always late each morning (like 30-40 mins late! once it was 2hrs - it was embarrassing. i just couldn't get out of bed every morning) and why I always needed to lie down in the sick bay at lunchtime and sometimes during normal work hours! Luckily in between these times I was pretty productive and they appreciated my overall contribution. Unfortunately I left that job to travel and now wish I could have one just like it again after all these years!

But then my next job was after i got back from my overseas trip which was when i got REALLY sick. This job started about 6 months before I got a diagnosis and was in a small family business retail store. It started off ok but went downhill quickly with all my sick days and lack of energy causing them to lose sales and have the store short staffed very often cos of me. They were really angry with me and I almost got fired, things got really really tough. They treated me like I wasn't being pro-active about my health and said stuff like I just needed to go to the doctor, but I explained I spent every other waking moment at doctors surgeries and getting blood tests etc trying to find out what on earth was wrong. Once I did get a diagnosis, they were relieved in a way and were much gentler on me, but it was still always a struggle and there were still many frustrations cast my way. I left once we mutually agreed that there was no point me being there if it's impacting negatively on their sales, and on my health (retail! what was i thinking! on my feet ALL day and all that cleaning!) The other sales assistants were pretty interested in CFS, probably cos only 2 of us worked in the store at a time and we needed to pass the time during chores with interesting stories. They learnt a lot about it from me (luckily they were young like me, and pretty open minded), and I got one of the funniest explanations for getting CFS I've ever heard from one of the girls there. She said that someone had thought ill of me, and had cast the evil eye on me! It didn't bother me though, coming from her it was pretty funny. Although I started to jokingly wish that was the cause of it, I figured an evil eye curse should be easier to remove than the real cause of cfs!

From there I looked specifically for a sit down office job with no sales! I decided I probably wouldn't tell my new employer, but when I was offered a job in a large corporation who had a pretty comprehensive contractual agreement and offered things like income protection insurance, I decided with my mum's help that I would write CFS/ME in the section of the contract that asked about medical conditions and injuries. I was pretty sure that this job was going to be a real tough adjustment for me (i'd be working full time for the first time in a long time, and had a lot of product info to learn and retain) and I figured that it might help me to have CFS mentioned in my paperwork for HR to keep. So that if I came across big health probs there, I had some sort of leverage to fight an unfair dismissal or similar, or to gain access to the income protection insurance based on the fact that I had forewarned them about my condition in my contract and that they still agreed to it. This was all guesswork on my part, but I just hoped for the best. And I figured that it was such a large company that it was unlikely that my immediate managers would need to find out from my contract, it would stay mostly in HR's hands. I kept it to myself for ages but eventually the position became really hard for me (it was a call centre which is defiantely not an easy structure to adhere to for a cfs suffer! Everything is measured and monitored and all times are recorded and reprimanded) and the department was becoming mismanaged and crazy busy anyway, and inevitably those two things made me sick and worn out i fell behind in my role. I had to tell my team leader about the CFS to explain my short comings and to ask for special consideration on certain aspects of my role. Unfortunately my team leaders kept changing as often as fortnightly or monthly which i didn't like (I had to explain to each one of them why I had double or triple the time allowed for toilet/drink breaks, not pleasant!) Management asked me to provide a doctor's letter explaining my symptoms and what aspects of my role these symptoms are likely to effect. When I went to my doctor he got really angry and said that was an invasion of my privacy! Unfortunately he has since retired, but he was great in this situation, because although I needed something to give them as far as a doctor's explanation went, he made a great point: he said that he can't write too much because otherwise he will render me unemployable in their eyes. He wrote a pretty decent letter (begrudgingly! I think he wanted to write them to go jump and stop wasting his time!) and the best thing he wrote on there was that 'the suffer is often misunderstood as they often appear extremely well'. This was great, cos they still thought I had been out shopping or holidaying on my sick days cos I would turn up to work again looking and sounding pretty ok, and usually pretty bubbly (cos I was feeling happy to be well again!). I pointed out to them that you will never see a CFS sufferer at work unless they are 'well' that day, cos anything less than that is 'sick as a dog'. There's no inbetween when you gotta get work done or you risk making yourself sicker.

Eventually there were so many issues within the department and between management and staff, that my CFS just compounded an already difficult work situation. By nature the job became unsuitable for my health to improve, and whilst I entered that job based on the fact that it was a service job not a sales job, it became a highly monitered and incentivised role within 6 weeks after starting. I got a lot of warnings that I wasn't adhering to my call time requirements and my sales targets (as well as multiple warnings about my sick days) And although I had explained how CFS fatigue and bouts of lightheadedness, lapses in concentration etc made it difficult to adhere to their very strict call times and achieve as many sales (I just didn't have the stamina or attention to detail in my fatigue) they didn't care when I suggested that I'd be really well suited to other admin/support roles they had available outside the call centre. I pointed out that they had offered me the job under false pretenses (they promised no sales or strict call times, which all changed completely within 6 weeks) In the end I hated the company and the job and had no fighting energy left so I quit. I told one or two close friends there about my CFS at the time and they were pretty good about it and kept it to themselves and never bugged me about it, but had they not become my friends initially, I would not have been telling any of my colleagues. I did, by accident more than intention, tell a guy I worked with who managed to blab about it in front of 2 others, and one of them said very casually 'oh, is that a mental illness?' I just shaked my head and set them straight on it, and luckily that worked out ok.

But I reckon I will always keep it on the low down with people I don't know too well, esp in the workplace, cos it can generate a negative response or I just become 'that girl with that weird thing', and I'd prefer to be known on the basis of my personality and the achievements of my work. I haven't worked for 9 months now, but I reckon in my next job I will be extra careful to make sure it's something I can do and there is little physical activity, and no sales targets or timed targets! And unless absolutely necessary, I won't tell management about my cfs upfront. I think you've just got to protect yourself and give yourself a fighting chance with jobs, without having to contend with misunderstanding or discrimination. That said each situation is a bit different, and I have read stories online from cfs sufferers who have had good reason to tell their employers and have had success with that. I'd be careful though, If you are experiencing a period of wellness and are seeking a promotion or future advancement in your role, you don't want to jeopardise the opportunites that could be offered to you down the track, that might not get offered to you if others mistakenly view you as 'incapable'.

Have you had anything in your job happen that makes you think you need to tell them?

It seems like either way we get prejudice and misunderstanding and sometimes its cos we've told someone, other times it's cos we haven't! I posted a forum topic here 'what do you say you have' which kind of touches on that. Marina had a good reply to it.

Anyhow I hope this stuff helps and makes sense (brain fog day).

This is a great site, have a good look around it if you get a chance. I'm pretty new too, but it's been so great to communicate with other sufferers on the forum or at least hear other stories and experiences and find out that many are quite similar to my own, and that it's not 'just me'!

maribel

Welcome Elle & hi Abbey & Maribel

Well, on the topic of what to tell employers - I am feeling quite fragile. I have been off work for 4 months on unpaid leave. After struggling with bouts of undiagnosed illness since 2004 I was finally diagnosed in 2008 with CFS. I continued to persevere until it got to the point where my employer said to me: You really need to ask yourself, are you well enough to be working? This really hit me hard but I am happy she was so direct. It was that combined with my complete debilitating physical and mental state that led me to my decision to take time off to concentrate purely on my recovery and learning more about my illness. Anyway, 4 months have passed and my employer now wants a better forecast for my recovery. Understandably this is hard. So HR in conjunction with Industrial Relations set me up a medicolegal appointment which I attended today. It wasn't pleasant. Again sharing every minute detail with a complete stranger. It is only now that I am contemplating how many people will have access to such private and personal information. Not to mention my employer may be presented with all the nitty gritty of my personal life (including info about my partner) - why it is relevant I don't know.

I am not one to regret - usually. I hope this won't be my first. If I wasn't in such a financial mess I wouldn't hang on to this job - but it is a safety net. Also, they overpaid me earlier in the year and I can't pay them back.

Anyway, has anyone else been through the medico legal bizzo?

Elle - I would probably say that it depends on what you are comfortable with and if you feel you will need additional resources or support at work. I am quite an open person and I usually can't help myself sharing with others. If my employer reacted badly or was unsupportive I would not stay there. True what Abbey says though about reporting it during the recruitment process for income insurance purposes. [i]It is a toughie. When you do explain it to an employer [i]I would probably make it clear as to how it is or isn't going to affect your work and why you felt it important to discuss with them. A letter from your Dr supporting this might be helpful as well.

Good luck !

Marina

Hi guys

Thanks heaps for the advice and for sharing your stories with me. As you may have read in my reply to Maribel (I've realised now that I should have replied to you all at once!) I have decided not to tell my employer and coworkers at the moment. I don't think that my CFS is impacting on my job in any obvious way and I'm only a casual so I don't have set days I have to turn up.

Abbey - you make a good point though about people making negative assumptions if they don't know you have CFS so I will keep that in mind for the future. Regarding any jobs I go for down the track (I only plan on working as a teacher's aide for the short term) I will probably have to tell prospective employers for a similiar reason to you - there is a big gap in my resume where I didn't study or work because I was too sick so I guess that will need an explanation. (I got the job I have now after doing my work placement for my course there so they never saw my resume.) I also agree with both of you about not wanting to work somewhere where they weren't understanding. I just hope I can find a place where they are! Anyway I'll deal with that bridge when I come to it!

Marina - I'm sorry to hear about your current situation. It must have been awful to disclose personal info to someone you had never met before. I count myself lucky that I've never had to go through the medico legal process. I hope everything works out okay for you - let me know how it goes.

Well anyway hope things improve for both of you and good luck for the rest of your course Abbey.

Elle.