Invisible disability and struggling at work — Scope | Disability forum
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Invisible disability and struggling at work

Marie88 Member Posts: 87 Connected
Hello, I am new to the forum. I have a persistent pain condition that has been ongoing for almost ten years and has progressively got worse over time. I’ve never had a proper diagnosis and feel my doctor doesn’t take me seriously.  I have been prescribed pain medication but this just masks the pain so I try to avoid taking it. It’s got to the point that I am unable to exercise anymore without triggering the pain. I am able to walk up to an hour on flat ground at a gentle pace, so this is what I have been doing the last few months to try to keep active. I used to love cycling but I am unable to do that or I’ll be in terrible pain for days or weeks afterwards.

I experience nerve pain in my lower back, pelvis and legs, whole body fatigue, muscle spasms and headaches. I am 31 but I feel so much older than my age, I feel so run down and ill all the time and it is really affecting my mental health. I have developed social anxiety and depression. I’ve lost contact with friends over the years because I felt too down being around others, I’m not the same person I once was and I feel so alone and miserable. 

I was previously employed in an office/reception role that allowed me to sit down most of the day, but I did stand sometimes too. Having the option of both really helped me to manage my pain at work and I was able to work 32 hours a week. I was in this role for six years, however, because of Covid I was furloughed, but this recently finished and they are unable to offer me any work. I found a sales assistant position 10 to 20 hours a week, usually two or three days. I started a month ago, however,  the constant standing, walking and repetitive movements have triggered a terrible pain flare up and I feel so unwell. I’m in so much pain on my days off that all I do at the moment is work and rest and it’s really affecting my quality of life. I don’t know how to talk to the manager, I didn’t mention my pain at interview or in the health forms I filled in when I started. I was so desperate for a job I accepted the position and prayed I wouldn’t get any pain. Because of the nature of the job I don’t think they could put anything in place to help me anyway, as it’s only a small team and I worry about how other colleagues would react, especially because my disability is invisible and because of my age.

Ideally I would work in a similar job to my previous office/reception one, however, I have undiagnosed dyslexia, and some kind of processing disorder which make it hard to follow instructions and learn new things. In my previous role I was working with a family member and the company was aware of my dyslexia and they were very understanding, but it took me years to get this role. I just feel I will really struggle in other roles that may be more demanding. I once tried call centre work and I lost the job because I couldn’t keep up with the training. I fear I won’t be able to find a suitable job and I’ll have to force myself to work in more physical roles that cause me pain, or otherwise try and get by on income support, but I don’t know If I will qualify and it probably won’t be enough.

I apologies for the long, rambling post, I am just feeling so worried about the future right now.


  • poppy123456
    poppy123456 Member Posts: 31,459 Disability Gamechanger
    HI and welcome,

    Was there any reason why you didn't tell your employer about your disability before you starting working there? It is always better to be honest with your employer when starting a new job. Firstly you need to speak to your employer about reasonable adjustments

    I would also advise you to speak to a different GP because it sounds like your existing one isn't very supportive or understanding.

    If you earn an average of £120 per week then you can claim SSP from your employer, with a fit note from your GP. SSP can be claimed for 28 weeks. If entitled to it then your employer must pay it.

    Regarding benefits. It's no longer possible to claim Income Support because this no longer exists for new claims. If you earn enough and are eligible for SSP once this ends you maybe entitled to claim New style ESA but this will totally depend on your NI contributions from working in tax year April 2017 to April 2019, although if you claim this once your SSP ends the tax years would have changed to April 2018 to April 2020. You will need a fit note from your GP and your SSP1 form from your employer to be able to claim this. If your over 25 it pays £74.35 per week. If under 25 it pays £58.90 per week. More details here.

    Universal Credit may also be possible as well as SSP but this will totally depend on your circumstances. If you have savings/capital of more than £16,000 you'll be excluded from claiming. If you live with a partner then you need to claim as a couple. You don't mention whether you're renting your home, own your own with a mortgage or live with parents. How much you maybe entitled to totally depends on your circumstances. Use a benefits calculator to check entitlement.

    There's also a disability benefit that you could look at claiming. It's called PIP (personal independence payments) It's not awarded based on a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. A successful claim can potentially take several months. More information here.

    PIP isn't means tested so income so household income doesn't affect the amount you maybe able to claim.

    Hope this helps and if you have anymore questions please do ask.

  • Marie88
    Marie88 Member Posts: 87 Connected
    Hi, I know I should have told them about my disability but this is something I struggle with. I have social anxiety and find it hard talking about myself, I also felt they wouldn’t believe me as people have doubted my pain in the past and I was worried I wouldn’t get the job. I’m not really sure when the right time to tell a new employer about my disability, on my application, during the interview or when I first start the job. I was in my previous job for six years and was very happy in the job, so this is all new to me as I my previous job didn’t make my pain worse.

    Thanks for the info, I will find out if I qualify for any of these. I am going to see a different gp as I can’t go on like this. I believe there is support through scope, helping people practise interviews and how to talk about their disability etc.
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @Marie88 - may I add that Scope certainly can help through their 'Support to Work' programme, if you're considering getting another job. Please see:
    Scope also has info on 'Reasonable adjustments.' Please see:   Perhaps it would at least be worthwhile discussing these with your current employer first. Hope this may help. :)
  • Marie88
    Marie88 Member Posts: 87 Connected
    edited October 2020
    Thank you ? I’ll definitely sign up for the ‘Support to Work’ programme as I really need to find a different job as soon as possible. I’ve been feeling terrible today and I was struggling doing the washing up, I really can’t do this anymore.
  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    Hi @Marie88 How are you feeling now?  I hope things are a wee bit better.

    I'd second you seeing a new GP to enquire about your impairment and work towards getting a diagnosis.  The 'not knowing' must add to your anxiety and fingers crossed you may be able to access some treatment.  

    I'm glad you are going to sign up for the Support to Work programme.  The team are a lovely bunch and will understand the fears and trepidation you have.  Positively, many jobs are now home-based since the pandemic (one silver lining!) so there's more scope for you to work from home and manage your needs.  I have everything crossed for you finding the perfect role.

    You mentioned you are feeling isolated and have lost contact with friends.  Do you have people you can confide in or talk to?  I understand how isolating chronic illness is and I'm sorry you are going through this.  If ever you should need anyone to talk to please remember our community is here 24/7 and want to support you through this  <3  it will get better.  
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