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Have you and your employer discussed workplace accommodations due to your AxSpA?

Working with a chronic condition like AxSpA can require changes in the workplace, reduced or changed hours, or even switching jobs. What have you found helpful from your employer or in the workplace to work more comfortable with AxSpA?

We share here some workplace considerations for people to consider with AxSpA.

  1. You know, 3.5 years ago I left a FT, very well paying job. This has been a hit to me financially in some ways, but it's also been doable. I've been succeeding as a freelancer WFH and I've learned my capability, adaptability, and determination. The freedom is the greatest stress relief and I am able to provide my body with the rest and pause it needs. I am in charge of my schedule and that is the MOST massive impact on my AS. It is a privilege, I know.

    My job tried to understand my needs, but ultimately it wasn't a match. The more I tried to prove myself worthy — fighting through horrific pain and brain fog — the more I "messed up." And the more my boss, who believed she was lenient and supportive, got on me as if to make me prove myself. Incredibly toxic.

    Companies do not understand that constant pain, limited mobility, and excessive brain fog due to stress/lack of rest/bad schedule/constant commuting and sitting (even with a standing desk!) degrades you.

    I advocate for anyone needing help to a) speak up about your needs if you cannot leave a job, b) seek other opportunities if you are suffering and c) find a support system during the transition.

    1. I was working as a medical secretary for so many years. It requires long sitting hours that i am still not able to do. I been on sick leave for 2 years and still haven't been able to return to the same position as it is an hour and more distance to drive there and back in traffic. The driving kills my body as it requires sitting for so long. Then to find parking and the walking long distance to go into work.

      I thought about it and it would be alot of stress on my body. I love my job so much. I am thinking of find a remote position where i am in more control on taking my breaks when needed, getting up and taking my breaks when i don't feel well. I thought of having my desk on the up floor in my room, where i do take breaks i can take a quick hot shower where it can help me out to relax my muscles.

      So i am in the lookout right now for remote. Going through this disease it's shown me not too push my body because lots of stress does a toll on you.

    2. Hi,
      Ah yes I hear you. It is hard when we realise that the work we used to do is not suitable for us anymore, and even more when you love your job!
      I have been through that as well, and I worked with a coach and changed career after my diagnosis. With patience, curiosity and work I have designed my new career to suit my needs, adapted to my new Me living with chronic diseases.
      I have written an article about that career change in case it's useful to you:
      Also, I found this article really inspiring and practical about the kind of jobs to consider:
      Take care,

  2. Hi there,
    Yes that is a big topic of discussion for sure! I have been working part-time since my diagnosis and it does suit me. It's quite easy to find part-time jobs here in the UK and you are considered as important as an employee who works full time, at least from my experience.
    I have been offered special equipment like a very comfy desk chair, laptop raiser, the possibility to assess my work station by a professional (although I did it myself with the guidance I found at the time and made arrangements for my desk).
    In terms of flexible hours, although being employed with a work contract and core working hours, so far I have been able to adapt those hours to my needs, and also get to work from home part of my time (even before Covid!).
    So I feel happy about the working conditions I have had so far since my diagnosis. I think it will only get better as I am now more knowledgeable and equipped to know what is best for me at work and to advocate for myself for any new job in the future.

    1. Wow! So glad to hear that they're not only supportive of PT employees and your needs, but that you have flexibility in your work. I love that you're advocating for yourself. Keep it up. I'd love to hear your thoughts on self-advocacy too!

    2. thanks! And I agree with you about the advantages of freelance work versus contracted work. It does make a big difference to be in charge of your schedule! I am PT freelancing and I feel in control of my self care and relieved of stress. Take care 😀

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