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We want to hear from you: please tell us about your experience of the online community.

People with chronic illness who manage to work, what do you do and how do you manage?

pippy33

I'm asking as someone with POTS who hopes to be able to work in the not too distant future.

Also If you were out of work for a significant period of time , please feel free to share your experience of getting back to work after your break

I'd love to hear some encouraging experiences

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Comments

L_Volunteer

Hey @pippy33. Welcome to Scope’s forum. I have several chronic illnesses so I thought I would respond – namely, vestibular migraine, visual stress, IBS/functional GI disorder, fibromyalgia, anaemia and hypothyroidism.

I currently work, hybrid, for a university’s finance services for students, administrating the hardship fund in particular. I manage through planning self-care each evening and weekend – what that looks like changes daily and weekly. It might be a longer sleep, a short walk in the sunshine, a TV programme or time with family, for example.

I also do things to fuel me throughout the day – usually this is in the form of listening to some favourite music while I work. I also have reasonable adjustments at work (e.g., flexi hours). This is particularly useful for the days I work in the office where I finish earlier to help manage the fatigue.

I also sometimes get taxis to and from work as it cuts out a lot of travel time, compared to the bus, which also helps to manage the fatigue. How long is a significant period of time out of work? I was out of work for about 5 months if that counts (it certainly felt like a significant period of time but I recognise some have even longer periods of time!).

How are you feeling about the idea of starting work? Here for you if you would like to talk to us more about where you are at with things at the moment or if there is anything else we can do to support you with this

pippy33

@L_Volunteer Hi. Thanks for your detailed response

those sound like good ajustments and ways of managing fatigue. Do you mind me asking how you came across that job?

Unfortunutly I've been out of work for a few years. I'm feeling a mix of feelings at the idea of starting work, excited but also nervous. I will be having a work capability assessment soon and I'm wondering how I put across how I struggle but also have it recognized I may be able to do a little of something. I know I couldn't manange working without support so I'm quite nervous about that.

L_Volunteer

Sure @pippy33. I recently graduated from a university. The university was recruiting for a graduate (from any university) for a post and I applied for it and was fortunate enough to be offered the job. I found out about the graduate scheme by talking to the university’s careers team. Very lucky to be in the position I am currently in – my last job with a different employer was not like this at all.

It might be worth leaving this for occupational health once you receive a job. I know occupational health, with me, put the capability to work but with reasonable adjustments (rather than capability to work without reasonable adjustments or no capability to work). For that reason, the reasonable adjustments are legally binding (under the Equality Act 2010 but I am not seen as unfit to work).

Happy to talk you through it if you have any further questions or anything else we can do to support you. I think it is largely through highlighting what you find difficult and the impact it has on you but the reasonable adjustments you know to make that impact more manageable for you

Kalps

Hi, @L-Volunteer,
I've just read about the various conditions you have and have to navigate life around these. I can certainly relate to the hypothyroidism. You maybe aware i have spinal injuries and for a long period of time ive developed a 'poor me/victim' mindset along with depression. can you give me some tips on how to stay positive as your drive & admiration is something i desire. Thanks, Kal

L_Volunteer

Hey @Kalps. Thank you for your response. In all honesty, I think we all have times when we have a 'poor me/victim' mindset - especially when you also struggle with depression.

There are days when I also have a 'poor me/victim' mindset - especially when bedbound from fatigue/pain. I just would not necessarily share that in all spaces or with all people.

However, for me, I allow myself to feel those emotions but focus on what I can do to help others. I guess part of that is asking what is it teaching me to allow me to support others.

I also focus on the things that mean the most to me - these things allow me to take care of myself and keep looking forwards, rather than focusing on the struggles.

Sometimes, in order to stay positive, it is having the double 'poor me/victim' mindset(!) and asking myself what is this taking away from me and how can I get where I want to be.

Please don't hesitate to ask any further questions or let us know if there is anything else we can do to support you