I’ve known for a while that I’d have to write a post about how to cope with a job and CFS. It’s quite a bittersweet topic for me, as I’ve definitely had my ups and downs and upsets around the world of work and in many ways, I let my job situation define me for many years.
As many of you have read in my story, I trained to be a high school teacher after I graduated from University. The course was tough- a hell of a lot tougher than my final year at Uni (which had been incredibly intense), but I was really keen to get my first real job and go full steam ahead with what I had learned on my year-long course. I moved to London with my other half and got a job at an amazing Performing Arts college- music to my ears, literally!
However, the days got longer and more physically exhausting. My legs, back and neck would ache constantly, I had terrible insomnia, I would get double-vision whilst teaching a lesson,I would slur my words and get really confused while teaching something really basic to a class. I would set my alarm an hour earlier than I had to sometimes, because I knew there was no way I was going to be able to get out of bed for at least 45 minutes after my alarm went off. Contrary to what some people think, teachers work really, really flippin’ hard. It’s not just about the teaching anymore- just when I had all my lessons planned for the next day, I had to answer emails, sort out admin, tidy my classroom- you name it. I quickly got very tired of having to do everything aside from what I loved to do, which was teach. Eventually, I was eating an evening meal of two bits of toast (you read that right) while preparing my lessons as home, as I simply could not bring myself to leave my work or relax (Type A personality? Me?!). I had so much to do- how could I? I had Friday nights off, spent most of Saturday sweating about school and then worked all day Sunday. It was absolutely no life at all, and I ignored all the relapses (some resulted in me being off for a week, for some I ended up in hospital, but the straw that broke the camel’s back was when I was off for around 4 months- hello CFS!) I had to push on- I just had to. All my friends who’d just graduated were earning great money and progressing in their careers, so I had to be seen to be doing the same (notice my language here- had to be seen to be, yikes!).
After I realised that I couldn’t handle the pace of teaching full time, I started my own tuition company and it was amazing. The company was basically me (ah-hem!), but I was just-packed solid with clients. I started work at about 4pm and would finished at around 8pm every night. I loved it because it meant I could have a lie-in, get up slowly, do my teaching prep during the day and, if I had some energy, go into the centre of London for a stroll. That stage of my life was so happy, and I was making the same amount of money as I was teaching in high school.
This whole experience taught me that it is possible to create your own employment situations, even when you’re dealing with CFS.
So, when I moved to Australia, I knew I had to do a job that gave me the same amount of flexibility. Teaching in the evenings gives me exactly the same amount of freedom and it means I can prioritise my health. I can go to yoga before I start teaching, have a healthy lunch, do some prep and then enjoy spending time teaching, rather than being a glorified admin monkey.
I started work in Sydney and was doing so well with the full-time thing that I decided to enter a 9km running event, as a group of people at school where doing it (running over the Sydney Harbour Bridge and finishing at the Opera House- how many people can say ‘no’ to that?!) Now, I should state that I hadn’t properly run since I was a student at school myself, but thought, ‘To hell with it- I can do 9km!” My body was screaming for me not to do it, but I did it and finished in a great time. The fact that I’d only jogged around the block twice before the event made my time even sweeter- yey me!
I knew something was off though when I couldn’t stomach solid food for a full 3 weeks after the race- 3 weeks! I must’ve shocked my body into oblivion…and then one morning I woke up, and guess what?! Woohoo! Relapse! I knew it was coming- I knew it! Cue- 2 months off work and me having to hand my notice in. After that I thought, “never again”- never again will I compromise my health for the sake of keeping up with everyone else…and to this day (so for the past two years now), CFS hasn’t bothered me at work once. I’m finally clear. Still teaching in the evenings and still being unwaveringly loyal to my health.
I know what you’re thinking though- that’s all very well for you, but how the hell am I supposed to handle it?
I’m one of the lucky ones. I manage to work full time and have left CFS and all its worries behind me. I know every one of you is in a different place on your journey- working full-time and killing yourself, working full-time and clinging on, working part-time, receiving care from loved ones, receiving benefits, looking for suitable work, unemployed or simply being so tired that you can’t even think about work.
The first step in the process is accepting wherever it is that you’re at. You know the Carl Jung quote, “What you resist persists”? – I resisted making changes to my job until health complications persisted in my life and ultimately caused me to relapse.
Here are some hard, honest question to help you find your way through working with Chronic Fatigue, bringing in an income and prioritising your health at whatever stage you’re at:
- Can you honestly, honestly cope with your job the way it is right now? Are you burning the candle at both ends in an attempt to save face and cover up what you’re really feeling? Do you know deep down that you’re heading for a fall (any day now)?
- Are you losing yourself in a job that really isn’t you and is sucking the life out of you and your soul?
- Is there any way you can alter your work environment or asked people at work to help you? Would leaving early one day a week help or asking to work from home now and then? Can you ask them to provide an adapted work station for you?
- Are you hiding your heath issues from people at work or are they supportive of you?
- Do you keep relapsing because of your job or your feelings towards your job? Are you frightened of relapsing?
- Do you know how to relax properly at the end of a day at work?
- Do you feel guilty for resting and recovering while everyone else is out there working (including your husband/wife or family)? I did, big time- this was my biggest obstacle.
- Is that extra day a week you’re working worth the money for the effect its having on your health?
- What hobby or habit can you incorporate into your day to make your life a little bit easier? (Playing with your children, having a green smoothie, walking around the block after hitting that spreadsheet, being kind to yourself or reading an inspirational book, for example)
- Do you keep beating yourself up because you hate your job, but can’t get out of it? Are you stuck in a cycle?
I know that finances play a huge part in our decisions towards work- we rely on our finances for our self-worth, stability and security, and packing our jobs in is a big decision. I know when I took that evening teaching job that I would be earning a lot less than teaching in high school. I kept searching online (with my big, fat ego egging me on), desperate for a high school job because of the money, even right up to signing my contract. But I knew deep down that we were going to be ok, and that this evening arrangement was the best thing for me. All of my friends have 9-5 super stressful jobs and live for the weekend, and I’ve finally stopped comparing myself to them. What’s the point? I’m happy, healthy and enjoying life (i.e. Monday- Friday, not just Saturday and Sunday)
I’d love to hear your comments below- are you working at the moment? What have been your difficulties?
Love and support,
I’m so glad you managed to find a way to work that suits you I’m a student from home at the moment, but I do dread looking for jobs when I graduate because of my CFS. All my previous jobs have been Front of House and required a lot of standing up on my feet all day/evening which just didn’t suit me. I’d like to think I’ll be able to cope with an office job if I just take really good care of myself, so we’ll see. I suppose I just have a fear of letting people down, and the temptation of taking days off is all too frequent for me! I’d love to find something, some sort of business idea I could begin at home and work on, so that I’d have something to fall back on – it’s just finding out what on earth that something is!!
Hi Marina- thank you so much for your comment. I really hear you with this- I have flung myself into something full time before, standing up and teaching all day only to find that my body wasn’t really going with it in the way I wanted it to. All you want to do is be professional and make something of yourself. The answer will come to you in time- you could always even go part-time and see how that suits you? Listen to your body and be really honest with yourself- that’s all you can do.
Thank you Marina- have a beautiful day!
I don’t have full blown cfs, but because of fibromyalgia, my energy is extremely limited. Unfortunately those last 3-5 years, I have used all my energy at work, and in return, haven’t been able to live an ordinary family life. Almost all my weekends are used for resting, so I’ll be able to go to work the following week. This has truly been exhausting, to say the least, and feelings of guilt come with it. I know that I must change my work conditions, but it is easier said than done, being an co-owner of a small retail store. The economic circumstances have not been in my favour. But I have come to understand that I must put my health first, I can’t live like this forever, this is no life and it is not fair towards my husband either.
I really relate to the last comment. I am a kindergarten teacher and I’m constantly surrounded by germs! This year started off on a very stressful note with a breakup which had financial implications, the loss of a beloved pet, family issues and an asbestos issue at work leading to displacement and destruction of all our classroom professional items. I wound up getting really sick, possibly a relapse and have been struggling to go to work as I can not afford not to work. After five weeks, just as I thought I was getting better, I contracted a sinus infection. Teaching in NY is very stressful with all the political obstructions and I feel like I live just to be able to perform my professional duties, always living in fear of a relapse, never able to truly enjoy myself. I feel like I’m losing my soul. There has to be a better sway and a better life! I am grateful for this page and would love positive insights! Thank you.
I initially had glandular fever in 2007 and it was mistreated by the doctor. It evolved into CFS unfortunately as I didn’t get any rest back then. Until today, I’m struggling with cfs and I stared having very serious anxiety and depression. Being a network engineer, my work is very technical and any mistake can cause very big problem for the company. I have to do night shift occasionally as we’ll.
I constantly worry about having to call a sick leave. I’m also losing all my confidence about work although I know I’m an expert of what I do. I still keep questioning my work and keep thinking at home what if I made some mistakes. I always going to work when I was sick, even when I’m having fever. I feel nervous when I have to request sick leave. I’m considering a part time option at the moment, but I don’t think that will help me much.
Wayne, I think even just considering your work options at the moment might be a good thing to do. CFS is unfortunately definitely a long-term game rather than a short-term one.
Take care of yourself,
Thanks Katie. I happen to be in Sydney too. I’m really happy that I read your blog today. I’m off from work again today due to constant fever this week.
When you see work options, do you mean career change? My specialist said something similar. He thinks that the nature of my job brings a lot of stress and it makes my cfs worse.
It’s really hard to give up on something I have pursued many years. I won’t be able to find another job which can match my current pay. But I guess it’s time for me to make that change.
Is there any meetup in Sydney for People with CFS. I’m interested to know people who are also suffering from this.
Hi Wayne, I’m also in Sydney and would love to meet up with you and Katie.
Hi Mandy- a Sydney meet-up is definitely something I’ve been thinking about. I’ve been thinking about a cafe which is central which has enough room for a few people at the weekend. Hhhhmmmm- will keep people posted via Facebook! xx
Thanks for your article: I’ll write more soon as I should be sleeping. In brief; I’ve just relapsed six months ago and I’m in the process of deciding whether to quit my job which I’ve had for 12 months now and been loving. I have however been getting progressively worse on the health front. It’s the first “proper job” I’ve been well enough to apply for since I first contracted CFS 15 years ago; it seems however that the full time nature of a day’s work as a primary school teacher is a marathon my body just isn’t dealing with. I better go to sleep now but hope to continue my letter to you soon.
Thanks again for sharing,
Mandy, high school teaching was a struggle as well (even when you’re completely well, it’s exhausting!) I can imagine primary teaching is as well. Looking forward to hearing more of your thoughts.
Love, Katie xx
I work 30 hours a week cleaning in a nursing home.I’m up at 630am five days a week,sometimes I struggle to get up,but I do as I’m the only one earning money in my household at the moment,and I have a family to support.I seem to be OK for the first hour,but then the exhaustion sets in,and my head feels fuzzy.I eat snacks and drink water throughout my shift,thinking it will make me feel better but I just feel worse.I have felt like this for over a year now, but the doctors just gave me folic acid tablets as a blood test revealed I was slightly anaemic,would appreciate your feedback if I do have cfs,many thanks.
Caroline, it’s very difficult for me to say whether or not you have CFS, as I’m not a trained medical professional. I would consider going back to see your doctor and asking them to run some tests, as you need to rule out many other illnesses before a diagnosis of CFS/M.E. can be given. Click here for more details about this.
Take care of yourself, Caroline- xx
Wow Katie, so much of what you have written rang true with me! I’m currently 24 and just started a 3 year teaching degree. I am already finding the workload stressful and go through phases of extreme anxiety and depression, roled into exhaustion. I am my own worst critic, constantly comparing myself to others and persuading myself ‘if only I had this or that, I’d be happy’. It has taken me years and a lot of hard work to even be accepted into university, overcoming severe depression, which lead me to drop out of college the first time around, and simply cannot permit myself to stumble at the final hurdle on my course! Nothing frightens me more when I observe other people in full time positions in mundane jobs, looking miserable and run-down (which is what attracted me to teaching – no day is the same!). However I am beginning to feel my bubble has burst as my ‘dream job’ appears to be that of a nightmare! Teachers seem to struggle with their work-life balance as they’re frantically running around with piles of endless paperwork and adhering to new, current government policies that preach ‘what teachers need to be doing’. I want to make a positive contribution to people’s lives as I like to think I’m a non-judgemtal and empathetic person but what can I do after my Primary education degree if I can’t teach? I’ll be back to square one and pushing 30! I know if I dropped out of uni the depression would plague me as I’d have the time to crytically analyse my life and feel a failure as a result. I’m panicked and my brain feels muffled due to insomnia and chronic worrying. The worst part is when I have had enough sleep and don’t feel bombarded with things, I’m the most positive, articulate person ever! I’m trying my very best but feel that I’m not cut out for 9-5 and stress as it sends me plumeting to that dark place which I vowed I’d never go back to. Any advice words of advice would be great!
Hi Nicola- thanks so much for taking the time to comment. I know exactly how you’re feeling, as someone who decided to get into teaching for all the reasons you’re talking about. I learned quite early on that the reality of teaching just wasn’t made for me, but I would suggest not ruling out teaching completely. I really enjoy my full time teaching job at the moment, and it’s very different to high school teaching. I learned, however, that it’s very easy to rule out all types of teaching, just because the branch that you trained in doesn’t work for you. Exploring other options that feel a little lighter to you might be something to think about.
Please feel free to explore my mentoring sessions if you’d like to explore this further- having CFS whilst teaching is a very special niche of mine! This article I wrote might also help you.
Keep smiling, Nicola- I know it all seems a little hopeless at the moment, but something will come through for you soon (I can feel it!)
Love, Katie xx
Hey great article. I would love to know what a tuition company is and what you do. Maybe it’s something i could do the hours seem good and I have a bachelors degree.
Hi Katie I just came across today and feel some level of relief. I’m about to quit from anew job. I felt I could salvage my self esteem after having had to work part time for the last for years, I realised full time and coupled with a new role are too too much for my head and body. The struggle to accept my current status is the hardest part. Part time work at my current capacity is esteem destroying or is it ego? I could feel are lapse coming on immediately. Normally my A type says never die, but my real self? Because I’ve never had a straight line career, it means I have to drop into some admin role. Truth be told I do love being detached and living in life and not for a job. I’m just trying to feel enough in that.
Sounds like you’ve had some incredible insights recently, Niki- good for you- xx
This article is a great and supportive!
I have struggled with CFS for 18 years, through teens, uni, work and having a family. I am currently struggling with the demands of being a mother to three kids. I desire to go back to work but every time I contemplate getting a job the children get sick (therefore I get sick) and puts me back into a fatigue spell. It is frustrating to want to get back to work but constantly struggling to keep your health a float.
The lack of community understanding of CFS I feel is a problem. I have many parents at school asking me when will I go back to work which only makes my type A personality tick.
Ah, yes- I used to hate that question too, Fi. It used to really upset me when people asked about it. I used to reframe it in my mind and tell myself, “There’s more to life than work!”!
Katie can you direct me where I can find information to best explain to friends and family what ME/chronic fatigue is medically and what one experiences when dealing with it? I love this article and am very happy to have found you! I was diagnosed almost 7 years ago and my family still wants to think my health problems are all related to depression. I get so frustrated trying to explain what I deal with and unfortunately I cannot put into words what exactly I experience because my thinking is not what it use to be. I am also a type A person which has complicated things even more. Any and all help would be appreciated. I get frustrated and exhausted continuously looking for the information I need. Thank you so much and I am so glad you have found the perfect combination that works for you!
Amie, I know exactly what you’re going through- my family thought I was homesick because I’d just started Uni and was away from home! This definitely wasn’t the case though.
There are a few articles I’ve written which might help:
* Coping with friends and family during CFS (video)
* A free mini ebook for friends and family
* Depression and CFS
* Symptoms of CFS (maybe one to show your family?)
I hope that’s ok to be going on with, lovely one. I’ve also got a list of resources you might find useful here.
Keep smiling, lovely one- I know exactly what you’re going through!