• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Back to work?

After many years of being away from full-time work, I just committed to a short stint of FULL TIME work.

After a week...I have managed...three days. I feel like somebody has run over my body with a lawn mower. And this is an improvement. 13 years ago, I was like a frog stuck in formaldahyde, gawping at a world that was strangely removed and distorted. I'm wondering should I go to my boss and 'confess' that I have a disability? The most degrading aspect of CFS/ME is the total lack of acknowledgement in the general community (and let's not get started about doctors) about this extremely debilitating illness. There is no space in the work place to negotiate the need to rest and recuperate.

However, 13 years of social isolation has been terrible. I eased into part-time work last year, and even though it has been the most difficult thing I have ever done (I felt like a fraud, faking that I felt 'healthy'), my mental health has improved. CFS/ME took away my social world, and I was very young when I got it. Now I have a social network of friends again, none of whom know I sick I was (or still am).

What a strange world we live in. The worst part of this illness is that while I might accept myself and my limitations, others don't. So, here I am, realising I just can't do full time, but scared that if I tell my boss I'll get a bad reputation in the very small sector that I work in.

Time to go to bed, read 'Walden' and think upon self-acceptance, joy in nature, and the stupidity of man...

Comments

sorry to hear that you misjudged what you can really do. If it was possible to wish ourselves well, there wouldnt be many of us sick. I do understand how being able to work thou is healthy for that mental health. It sucks.. what helps something makes another thing worst.

I'm wondering should I go to my boss and 'confess' that I have a disability?

I myself think you need to do that and need to do that ASAP, before you worsen your whole condition and end up possibly not being able to work at all. Try to get yourself back to part time at a level you werent making things worst.

Best luck
 
Glad you are able to work and have a group of friends. I know the isolation is horrible.

It would be a good idea to tell your boss that you are recovering from an illness. As my husband tells me, everyone does not need to know everything. You would not need to tell him what illness, just that you are excited to be back to work and want to do a great job, but there may be times that you will need to take a break or rest. If he gives you a hard time, then go to your HR Department if there is one. I had to do that with an employer. The HR group is very sympathetic, my manager not so much.

It is hard to be sick when everyone else is well. And most people do not understand.

Glad you are out in the world again. I know its a great psychological boost.
 
I know what you are going thru. For me, it took years to realize was disabled. Then comes the task of how to manage everybody's perception and everything else. However, I finally decided that I am disabled, (even though I never go in to specifc details with people anymore) and over-doing it just makes things worse.

What I try and focus on now (which is very hard still) is trying to understand and cope with my reality. Which is: I am sick, I get sicker when over doing it, I can't do some things I want to, and very few people are capable of understanding my illness(i didn't for years).

I just try and focus on my health and survival, (even though I am very compassionate) it seems like an impossible task of feeling gulity for being too sick to work full time. activity within limitations may be good, but overdoing it can be disaterous.
 
I think Becky has a good idea. Tell you Boss you are recovering from an illness & there may be times when you need to take a break or rest.

At the moment, It might also be an idea to ask if you can split up your work day & take regular breaks (in order to ease yourself back into full time work). Ensure you work extra time to make up those breaks (initially) - so you Boss keeps a good impression of your work ethics.

Then if you find this doesn't work & you REALLY overestimated your capacity to work full time, you need to talk to your Boss & explain the situation. In that event, see if you can work part-time or if your Boss is willing for you to job share with someone else.

The important thing is not to quit the job until you have explored other ways of doing the job.

If all fails, then you need to accept this & quit (like I did).

I worked full-time for many years (beyond my capacity) and it was certainly detrimental to my overall health, both mentally & physically.

And of course, there is also the financial aspect & self esteem issues (let alone the social aspects of working).

I always felt torn between not wanting to admit I couldn't do the job and, scared of the lack of income.

(As a solitary individual who works well on their own, I didn't worry about the social aspect at all).
 
Thank you so much everyone for your comments. It is really bizarre to be at work and having to hide how rotten I'm feeling. Sometimes I go to the toilet just so I can sit down and close my eyes! I have found all of your comments very helpful, especially a) they don't need to know my specific disability, b) breaking the work into manageable amounts and c) HR is a useful back-up. Anyway...the money is good. It's nice not to worry about whether or not buying a bread roll will break the budget.
 
If you have a diagnosis, your place of work may have to accomadate you. I don't know about your country, but I was able to ask for a tailored work schedule in the u.s.a.. My workplace reluctantly gave me one, which, however was still unacceptable! I took them to the Massachusetts Commision Against Discrimination and won. That was back in the mid 80s, hopefully this process is working more smoothly now.
 
whoa! somebody hit a nerve with HR. HR IS NOT ON YOUR SIDE! "human resources" NOT!

The "HR department" is to protect the legal and financial interests of the company. Trust me, I found out the hard way.

I went to HR to ask if I had LTD benefits when I got to sick to work. I figured no problem, I have always been a 5 star employee and they were always nice to me. Was I WRONG.... I was told I did not have LTD insurance and terminated a few weeks later. Only to find out a year later I did have benefits. I tell people this and they look at me like where have you been....Like everybody knew HR was the enemy.

Maybe quadraplegics will get some simpathy, but for us with a little fatigue, dizzyness, and headaches, forget it.

However, HR should be willing to make reasonable accomodations for the disabled by law in the US.

Wishing you well,
Mark
 
When I applied to HR, I was asking for a medical leave. What I discovered, there are two types of medical leaves, one is a set time (like a month), the other is intermittent. These are federal programs, which means you cannot be terminated for time away from medical conditions. My doctor completed the forms for both. Intermittent leave means that I may need time off work due to medical condition for a day or two. I would still need to complete the requirements of my job. It allowed for time away from work outside of my sick leave and vacation time. I listed my medical condition as sleep disorder. Companies don't like to hear chronic fatigue, as we all know. My manager later told me that this is a federally regulated program and he could not touch me. I later quit because even with leaves I just couldn't keep up.
 
I feel the same way. Even though I have worked part time through my 6 years of illness it was very hard for people to understand what was going on with me. I would walk into work and smile and pretend that I was okay when inside I felt as though I was dying. People don't want to hear that you not feeling well. I would do the same thing..go into the bathroom and sit with my eyes closed.
Even though my boss was very accommidating I think most of the time he forgot I was really sick because I didn't look like I was.

Now after 6 years of playing my game of going to work and smiling and laughing but coming home and suffering I am done. Tomorrow is my last day of work sadly really. I fought so hard to keep going because I enjoy my job and my co workers but my body won't allow it anymore and I just can't let myself go through days of suffering from severe exhaustion anymore...

I hope you won't do this to yourself and hopefully you have a boss that will understand. I know it is very difficult when this most people just don't get it....good luck
 
Hmmm...do you really except who you are if you can't confess that you are sick? I have struggled with that. However, I hear what you are saying about work. I run a business and after being back to it, really back to it this week, I am a little run down. BUT, if I do nothing, I am unhappy and obsessive about things that I shouldn't be including how I want a life. It's a toss.

I may have to give up what I do because I am too sick to really MAKE this business work. The work is endless and it's horrible. I love designing jewelry, but the business aspect is too much work.

I hate that people don't get it too. We are like aliens.
 
Wow, yeah HR is the beast with teeth. They are totally the enemy. Hence my bind. I don't want to 'tarnish' my reputation and become known as a whinging 'malingerer'. It's not just CFS that gets this stuff - my mum is missing parts of her spine, is in tremendous pain, and gets routinely discriminated against at work. But hey, someone has to pay the bills.

Soxfan, I'm sorry to hear you have to stop working. I stopped eleven years ago in a state of extreme exhaustion - I'd lost my eyesight in one eye from an out of control virus. I went back to uni four years ago and that helped ease me back in. I've decided after this week I'm going for a PhD scholarship, at least I can work in my own hours, and I don't HAVE TO TALK TO HR.

Spitfire, good luck with your business. It's hard to keep your eye on the prize. The prize for me is still being engaged in the community despite my disability.
 

Blog entry information

Author
Nermalina
Read time
2 min read
Views
977
Comments
11
Last update

More entries in User Blogs

  • Daily doodal dandy
    Just testing this out
  • Covid day 75
    Well since my last few updates I started to suffer from exhaustion and...
  • Pray
    If you pray, will you pray for me please? I have covid pneumonia and...

More entries from Nermalina