How do people manage work?

Hi! My first post yay.

So I've just graduated university - I was diagnosed with fibro in my last year and barely made it through. Now that I've graduated...what do I do? I feel like I can't cope with a regular job - I couldn't do anything involving standing for too long but also concentrating on a computer and writing really takes it out of me.

I'm only 22 so obviously I have to do a job of some sort at some point. Just wondering if anyone has any advice or experience as I'm a bit stuck

Thankyou :)

17 Replies

  • Ooh! Brain fog prevents any sensible or helpful comment. Long time since I was 22 :)

    But I do want to say welcome! :) I'm sure you will get more helpful replies. Whatever the future brings, I'm sure you will find a way through + medical advances will hopefully open more opportunities for you. I wish you well. :) xx

  • Hi I was wondering the same thing. I'm 30 and finishing up my masters. Just been diagnosed. I want to go into museum curating which can be very physical but I'm barely coping with work at the moment. I do a front of house desk job in a museum. I only work 3 and a half days a week but I'm so tired some days I can't face going in. I've also had too many sick days.

    How do others cope with this? Will it get better once we've worked out how to manage our condition?

    What happens if we can't work?

    I don't know about you hannahrose93 but I'm worried all my hard work and ambitions have gone down the toilet

  • Hello Iv had Fibro for ten years and working the last five years was hard but I never gave up unfortunately fibro gets worse I feel so I hope it all goes well for You , Just two many young people getting this awful syndrome now xx

  • Hi

    I think the thing is to maybe try par time work and see how you get on?

    Like everything we have to pace ourselves, once we know our limitations we can then, gently try to do more and see how we get on.

    It's not going to be easy for you but maybe a par time receptionist job,mthanks not too taxing and usual means your sitting down.mif that works see what you can do which maybe more interesting for you.

    Try not to stress as this makes it worse, just try doing one day at a time.

    Good luck and best wishes.

  • Hi and welcome#! Congratulations on graduating from college that great.Im from the US so I don't know what your options are in the UK but I wish you the best. Peck.🐤

  • Hi Hannahrose93

    Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

    Firstly, congratulations on graduating from university. I agree with Fibropop as part time working initially may be the way forward? It may be easier to break yourself in to work this way?

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Firstly, congratulations. You have managed to complete your final year, the hardest year of your degree, despite Fibro.

    I think everyone is different, has a different experience of the disease. The advantage you have is that you are young and therefore more physically resilient than if you were to get this at a later stage. We none of us know exactly what the trajectory of our illness will be, or when new treatments will emerge.

    More and more jobs will be home based in the future. New technologies will mean different ways of working. This gives you more flexibility in terms of how you pace your work. In the meantime finding a part time job, or doing some voluntary work might be a way in to establishing what you can do.

    For young people accessing this site it might be disheartening to read some posts at times. Many of us have developed this illness much later in life and exists alongside other conditions. I had CFS for 20 years and managed to work, despite being told I wouldn't be able to. I'm now retired and have Fibro, but still paint and do some academic writing. It's a struggle at times but with pacing I manage.

    I wish you well. Hilary x

  • Hi. Congratulations on graduating. Sorry you have Fm. I have had this for years combined with atrial fibrillation so had to stop regular work. So I looked for something I could do that I enjoyed and would help me. I trained as a reflexologist, and then worked as a practitioner from home. But I am very lucky as husband is main breadwinner.

    Stress of studying probably didnt help you. Hopefully symptoms may settle down a bit. I have found I need to keep as active as possible otherwise get more stiff and painful. Swimming and pilates are good for fm. I dont know your situation, are you living with parents now, what degree did you do at uni, do they have a careers advice centre. Perhaps you can start with part time if at home. Temp work is also good to start with as you can gauge your stamina. But do claim job seekers and get them to help you too. You will at least get your national insurane underway.

    Best wishes

  • Hi Hannahrose93 and welcome to the forum.

    Congratulations on graduating university. I haven't been to university, though I did start an OU course whilst at work around 15 years ago, which I had to give up because it was too much on top of full time work. I had to give up work altogether about five years ago too.

    So I've never been in quite the same situation as you. But I would suggest that if you have managed to hold down a university course then you clearly are capable of holding down some sort of job.

    Fibropop is right, probably your best bet is to start with part time work or maybe even temping at a few different jobs just to get a feel of what works for you and what doesn't, what is expected of you in various different companies and roles etc. Did you do any sort of placement with your university course? If so how did you cope with that?

    As for how you cope. Well, what were your strategies for coping at university. Are they maybe things that you could adapt to a workplace. Not always that easy I know because you are paid to do a job and in many respects can't just do what suits you. But on the other hand living with Fibro and similar conditions is about learning to adapt and adjust as your condition or circumstances, needs or requirements change.

    I hope you find something that works for you, but remember if you can organise yourself and knuckle down to university life then you can do the same in the workplace to. It just means getting used to a new environment.

    Take it easy with small steps to start with, gentle hugs,

  • I am 29. Recently diagnosed although my onset was right when I finished my 4 year teaching degree. If you can take a break and focus on your health and how to manage your fm, it could be helpful. I was able to since I graduated a semester early in the fall so I had to wait until the summer to find a full-time teaching job. I worked part-time and subbed. I didn't manage my fibro then and every year it got worse and worse until this past year, 7 years later, I got to the point where I had to go on medical leave. Fibromyalgia was being made worse by obstructive sleep apnea and those combined turned into chronic fatigue syndrome. I don't mean to scare you, everyone is different, but for me, I had to stop trying to live my "normal life" and learn to manage my fibro. I spent 9 months focusing only on my health- slowly increasing cardio exercise (I started with 3-5 minutes and increased 2 minutes a week as I could tolerate it), saw a therapist weekly, saw a nutritionist every few weeks, found a good rheumatologist that I felt comfortable with, managed my ADHD, managed my obstructive sleep apnea, learned which foods made me feel worse and learned to avoid them, got on the right meds, learned to say "no" to family and friends when I needed to, learned to ask for help when I need it, and I learned how to explain to loved ones how I am feeling and what that means in terms of what I could do that day.

    I can now do a 30 minute walk most days. I can clean moderately, but since I will return to work on Monday (yay!), I hired someone to come clean once a month for $80 and I will tidy and do what I can in between. I am returning to teaching. I believe that you can work eventually. It's not a guarantee, but believe it, try your best to learn to manage fibro, and then give working part-time a shot. Having a positive mindset is so important with this illness. I am sorry you have it, but I hope that you are able to learn to enjoy life even with this debilitating illness. I asked my rheumatologist the same question back in March when it still felt like I hadn't made much progress (side note- learn to celebrate small successes because I actually had made a ton of progress but I didn't realize it compared to what I thought I should be able to do at 29 years old... Be gentle with yourself), anyway, my rheumatologist responded by saying that 90% of his patients are able to work. That comforted me. I hope something I have said has comforted you. Best of luck!

  • This is such a helpful post, you give very good advice. You are so right about congratulating yourself on the small things. Those are encouraging statistics from your rheumatologist and again proof that everyone's experience of the illness is different. I wish you luck with your job, Hilary

  • Hello and welcome to the forum, I'm no help with this, just saying hello and huge congratulations for graduation xx

  • Hi, I can totally empathise with you - prior to my diagnosis last year I was extremely active and up for getting involved no matter what so having to take a step back and think what now, knocked me a little and with two young children for a while I felt well and truly 'stuck'! However, having taken 6 months off work, I reduced my hours and returned to work in February alongside trialling different kinds of exercise, treatments and lifestyle changes along the way. Now, almost a year on from when it all started I am in a much better place and feel such a sense of achievement. My advice would be to take each day as it comes amd from a work point of view look into voluntary, part-time, temporary or sessional work that may be available while you get to know what you can do and above all be kind to yourself by focusing on the positives whilst celebrating the little things.

    Despite your diagnosis, you can still achieve your dreams the way forward may just be a little different than you first imagined.

    Good luck and I hope all goes well whatever you decide, Sam x

  • Hi, Congrats on graduating, I'm just starting my final year but as a mature student I've got a few years on you and had many jobs. I'm only recently diagnosed so can't speak to how employers will react but you have the advantage of a friendly marketplace towards disabilities than when I was younger so hopefully they should be accommodating.

    You didn't mention what you studied so I won't make specific suggestions but you're young enough to try a few jobs and see what suits, look at the volunteer sector too as that lets you try things out, find your level and they can't exactly complain if you can't make a shift.

    Best of luck

  • Well, what is your degree in?

    I would try to do freelance work so that you are in control of when and where. When I am not in a flare I can be pretty productive as long as I remember not too push myself too hard and to change my position a lot. I rotate my duties to keep my body from hurting more from staying in one position or over using a certain muscle group.

    Try to keep your meds/vitamins minerals consistent along with any other holistic routines- stretching, range of motion or gentle exercise, mindful walking, meditation, whatever.

    A flare will happen so try not to stress yourself into one faster. My mental state does affect my physical state.

    And maybe try to have a plan b for things if you feel a flare coming or if you find yourself eyeball deep in one.

    I hope some of that helps.

    Good luck.

  • I have absolutely no idea how people manage to work, I bet their life is very hard, I can't work, not a chance..

  • Hello, for me being able to work flexi hours helps and holidays get used up on poorly days, not real holidays. I take a lot of supplements advised by an alternative practitioner and use Groupon to find affordable massage. He also advised to try 10 mins twice a day exercise, I invested in an exercise bike, some days or weeks its untouched it when I can it strangely helps with the pain! Hope this has been helpful, Lizzie

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