Your experiences with work and RA

[Victoria-NRAS]

Hi all

We are in the process of updating our work booklets and we would really like some short quotes to include about people's personal experiences with work and RA.

If you are happy to be quoted in the booklet, please write a short quote (we can always edit down a slightly longer quote) in the comments on this post, including your name if you are happy for that to be included in the booklet.

I cannot guarantee that your quote will be used, as it depends on what we have space for and what fits with the text.

These are some of the topics we would like quotes about:

1. Experience from someone whose work pattern has changed since COVID, e.g. someone who now works remotely or does more remote work since lockdown, and how this may have benefited you.

2. A quote from a supportive employer, especially if they are a small business owner. If your employer has been particularly supportive, it would be great if you could get them to write something about how supporting you benefited the business and a quote from you on how it helped.

3. Quotes from people in physically demanding jobs, on any adjustments that have helped you to stay in work.

4. Quotes from people in any non-office based roles, but in particular NHS staff and teachers.

5. How you felt about telling work and what made you decide to make them aware of your diagnosis.

6. If anyone gave one of our Employer's Guide booklets to their employer, has this been helpful? Do you feel they understand your condition better now?

If you have something to say that doesn't fall into one of the above, all quotes are welcome. We may be able to use them for other projects or articles in the future and we would like to hear people's experiences, both good and bad.

Many thanks in advance.

Victoria Butler (NRAS Information Resource Manager)

[Chocnbags]

where do I find your work booklet so I can give it my employer as they are useless!

[Victoria-NRAS Partner Moderator NRAS in reply to Chocnbags]

You'll find both our work booklets here. One is for you, to give you an idea of your rights at work and the other is to give to your employer, so that they have a better understanding of how your RA could affect you at work and also to remind them of what they should be doing for you! Hope they help.

[Chocnbags in reply to Victoria-NRAS]

hello I cannot find the booklet is there a link please

[KittyJ in reply to Chocnbags]

here you go

nras.org.uk/product/an-empl...

nras.org.uk/product/i-want-...

[Chocnbags in reply to KittyJ]

Hello ii have ordered a booklet to download but haven't received one yet x

[KittyJ in reply to Chocnbags]

it comes immediately you order it, did you complete all the order info? In your email click on download in the order details.

[Chocnbags in reply to KittyJ]

Yes I had a email to say they had received my order and are processing it .

[KittyJ in reply to Chocnbags]

it’s on that email, click here to download it

Screenshot showing where to download publications in an email

[Tkat10]

I work in the NHS and have done for 23 years post my diagnosis of RA. I have had a varied experience and different managers have ranged from very supportive to by the book. I have to pass occupational health assessment every time I change role, but as a non physical role I have not found this prohibitive. In context I joined the NHS after a very bad experience at a national company while struggling to manage my condition. I was effectively constructively dismissed but in time to ensure I could not challenge.

On a positive note as my role is now in management I have been working a hybrid (home and office) pattern since COVID and it has been a real game changer for my work life balance. Pre covid I worked a 3 days in the office 2 days at home and sometimes I was so exhausted that it effected what I was able to do outside of work even on a weekend.

One thing to note is that I have a very candid discussion with my rheumatology team about my medication. I often remind them that right now I finally have the career I have been trying to have since before my diagnosis (at the age of 28) and we negotiate treatment that will ensure I can continue to work. For context I work as an analyst so having a focused mind is essential.

[Victoria-NRAS Partner Moderator NRAS in reply to Tkat10]

Thank you for replying. You make some really interesting points here. Good to read about how your work pattern has changed for the better and you make a great point about speaking to your rheumatology team.

If we were to include any of what you have said in our booklets or elsewhere, would you want to be anonymous or would it be okay to include your first and last name, or just first name if you prefer? If you are happy for these to be included you can private message your name to me if you like.

Thanks again for your insights.

[Grumpyoldmare]

Hi Victoria. I developed RA as soon as my son was born over 27 years ago. At the time it devastated my career. I had been a senior Management Accountant working in industry and planned to return to work after maternity leave. Sadly my RA was so sudden and severe I was unable to do that. My hands and wrists were so badly affected I couldnt use a computer and I couldnt sit at a desk for any length of time. It took several years to find the right drugs to bring my symptoms under control. The RA forcd a complete unwantec reassessment. My husband left the Army as I couldn't manage alone when he was away and we moved to a smallholding with 21 sheep. This has given me a whole new life. With RA better controlled I found a more outdoor, active lifestyle really helped. More walking etc made me feel better. As my physio says to move is to lube (lubricate), to rest is to rust, use it our loose it! We have, over 20 plus years built up to farming 180 acres, have 200 sheep and 50 plus cows. I wouldnt go back to an office job even tho financially I wss much better off. It isnt always easy. I have flares and get tired but when you have animals you have to keep going and they give me the motivation to work through pain and fatigue. Being self employed and having supportive family and friends helps but I still do most of the daily jobs myself (Hubbie has a full time day job).

So there is hope and there are options

[Victoria-NRAS Partner Moderator NRAS in reply to Grumpyoldmare]

Wow! Your diagnosis completely changes the course of yours and your husband's careers and lifestyle, but I think it's incredible that you have turned that into something so positive.

[RAGuy]

This is a very real worry for RA patients whilst the stress makes their RA symptoms worse.

As a volunteer I regularly speak to RA patients and every week someone will ask me for our booklets. They are worried about telling their boss, their colleagues or HR and getting stressed about losing their job if they do say anything.

[Hidden]

It took 2 years to find, but I got a job one day a week (university) term time only. Loads of breaks for resting, and provided me with a ‘holiday fund’.

Did me the world of good. Felt like I was ‘part of things’ again.

Did this for 5 years before I had to medically retire.

Angela