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Hello AS family,

I got a new job! It will be my first full-time, in-office gig since my diagnosis. It's not perfect, for instance entrance to the office is up three flights of stairs (ow) and it's minimum wage (also ow)... but it's a fresh start so I'm gonna give it my best.

I struggle with most basic tasks as it is, like laundry and cooking, so I'm pretty nervous about how to manage these things AND work. Also hiring help is not an option because of budget constraints.

Thought we could have a discussion about how to manage work alongside AS. I'm sure a lot of you have been able to figure out some useful work-arounds and I'd love to hear your wisdom!

Also- how did you communicate your needs to your new boss and colleagues and what kind of accommodations have you asked for?

  1. Hello,

    This is great to hear you got a new job! You must be excited 😀 I understand that you also apprehend to be working full time as well. I hear you, I was nervous when changing jobs and wondering how I would cope with AxSpa at work.

    I have done few things that were useful to me: giving leaflets about my condition at work, be honest about my diagnosis from day 1, taking any opportunity to get support in terms of work settings including checking my work station and make it as comfortable a possible (that might mean getting a new chair, laptop riser, external keyboard and mouse, a second screen, a heated pad for my back, a foot rest, etc.), discussing flexi time for working pattern.
    I have got the gear to make me work comfortably at the desk, all paid by work, and adapted my work pattern to my needs by talking to my employers. I feel when I have expressed my concerns and asked for adaptations, I was heard. I guess I have learnt to advocate for myself along the way 😉

    Also, I have been careful with workload and any stress related to work, deadlines, meetings, as these can create tension for me and trigger my symptoms. This has been one of my biggest learning curve carrying on working after getting my diagnosis. I like my career now, which I have designed for myself, I feel in control and motivated by what I do. I hope you will find confidence and happiness in doing your new job.

    Take care,

    1. I was upfront about my Dx with my boss after I got hired. I offered to apply for employee assistance but my boss is extremely supportive (I think it helps I work in a medical setting) and I haven’t needed to.
      I park upfront and take the elevator instead of the stairs (most employees use the back and stairs but a handful of us can’t). I use my handicap if needed. I’ve been transparent with all my colleagues and residents about my AS which I also think helps decrease stigma. My residents have been very supportive and will even offer me a chair if they know I’ve been standing for awhile.
      I have a “Flare Bear” pin on my name badge that creates conversation as well as makes light of my AS. I have found my transparency about my AS usually creates more connection.
      That being said, not everyone understands. My in-laws, for example, although very loving think it’s “just really bad arthritis”. But I find most people I work with are considerate and kind. Also, you can always work with HR / employee assistant if there’s fear of discrimination.

      1. It's encouraging to know that you have a supportive boss, as it can make a significant difference in your work experience. Being upfront and open about your condition with your employer can help create a supportive work environment and ensure that they understand any accommodations you may need. And - It's commendable that you offered to apply for employee assistance, as it shows your proactive approach to managing your condition while maintaining your job responsibilities. Employee assistance programs can provide valuable resources and support, including counseling services, referral to specialists, and accommodations in the workplace. Communication is key throughout this process. Thanks for sharing this experience. It's inspiring for those just returning to work or starting a new position. Wishing you well on this journey. Rebecca (community moderator)

    2. Hi Alicia! Congrats on the new job! About a year and a half ago I made the change from an active job where I was on my feet a lot, to an office based job.

      I did speak to my employer about my health. One thing I found useful was that I sent an ‘employers guide to AS’ from the AS charity in the U.K. I think this was helpful for them to understand AS, and also their responsibilities to me as an employee. I think sometimes employers don’t have that much knowledge about what they need to do, and have a knee jerk reaction of worry and fear that isn’t great. They thanked me for sending the guide as they said it was helpful.

      If moving around is helpful for you, have you thought about getting an adjustable desk? That way you could work standing or seated.

      Having breaks could also be an adjustment for them to make based on AS, for example 5/10 minute breaks between tasks so you can stretch and move about.

      One thing I have found really useful with my employer, is that I work flexible hours. So basically, I don’t need to call in sick if I’m not feeling great one day. I can work a shorter day, and make up the time at some point later on, as long as I am around for important meetings. I can also start later, which is good if I’m having a lot of stiffness in the morning. I understand that it probably depends what kind of job you’re in on how well this will work. For me, my employer said it’s more important that the job is done well than when it is done, and it’s helped reduce my sick leave massively! Last year I only had 4 sick days (and that was from covid) compared to about 8 weeks worth the year before.

      It can definitely be daunting going back to work and changing things in life when we have to think about health conditions too. One thing I found when I started my new job was that I was absolutely exhausted, but this did settle down after the first few weeks and I think a lot of it was down to everything being new. I wish I’d been a bit more aware at the time, because I totally catastrophised and thought I would always feel like that. I hope that things go smoothly for you, and let us know how you get on! 😀

      1. You're right that many employers may not have a deep understanding of spondyloarthritis or other chronic conditions. By sharing educational resources like the guide you mentioned, you empower them to learn more about the condition and its impact on your daily life. This knowledge can help dispel any misconceptions or fears they may have had initially.

        By taking the initiative to share educational materials, you not only support your own well-being but also contribute to creating a more inclusive and understanding work environment. This can benefit not only you but potentially other employees who may face similar challenges in the future.

        We appreciate your words of encouragement and tips on how and what to expect during the first month or so after starting a new job. Very reassuring. Warmly, Rebecca (community moderator)

    3. I have an adjustable standing desks so I can be up and down, also a mini electric blanket and I keep ice packs in the kitchen fridge. My drawer also has a stick of pain killers. My employer didn't allow it but hours that avoid rush hour would be a massive help e.g. 8-4

      1. ,
        Great suggestions Monica!
        Thanks so much for sharing. ~Doreen (Team Member)

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