How's your experiences been at work?
Hello again - I bought this up with my UK community, but interested to see how it compares across the 'pond'.
Over the last year I’d been struggling at work - even with an office based job and I don’t know about you, but I kind of feel that because RA affects so few of us, many people just don’t get what a struggle some days can be like.
At the beginning when I could barely walk, people would see me stagger across the car park and if I’d been sat for more than 30 minutes I’d struggle to stand, then slowly move across the office. I had one guy keep calling me “skippy” and take the mick when he saw me trying to walk. What made it worse would be in the afternoon I’d be walking relatively normally so people would then make comment I “seem OK now” or even worse, they’d be like “have you forgot to limp?” like I’m making it up.
It was all light-hearted stuff, but it does affect you in those moments of reflection. Then of course, during (yet another) course of steroids, I’d appear right as rain.
With some perseverance I eventually engaged with Occupational Health at work - but even then, the adjustments they’d usually make for people with disabilities didn’t really help me - for example I don’t want a comfy chair because I don’t want to seize up from lack of movement! That said, both my boss and LM are well aware now of my morning struggles and have given me leeway in getting ready for work on my worst mornings, along with understanding with the sheer number of medical appointments I need to take - from consultations to blood tests. Nevertheless - I feel like a burden.
And I know people only jest about “having more time off than Clint Eastwood’s safety catch” but it does get you down in those quiet moments.
I’m not too far from retirement so I’m pretty confident this will erase any doubts of me pulling the plug when I hit 57 - but it’s those people in their 20s and 30s with RA who I really feel sorry for.
I posted a video about it but I'm not sure I got all the disability links right for the US and Canada - I'd be grateful if someone could please have a glance over?
I can't post URLs so you'd need to copy and paste the YouTube link into your browser.
https://youtu.be/HAcqvh196a8
Working while managing RA can be really challenging in general, especially with how unpredictable it is. One day you’re managing okay, and the next everything feels like a struggle, and people don’t always see that shift. And you’re right, it’s especially hard for people who are earlier in their careers trying to navigate all of this while still building their path. While you wait for others to share their experience, I want to attach a thread where members have talked about their working experience, I think you might find in insightful from this side of the pond- https://rheumatoidarthritis.net/forums/working-with-ra. And again, you've created another valuable video and it is wonderful! Thanks always! -Latoya (Team Member) Ah Ok I did look for a topical discussion but being relatively new, couldn't seem to find it - but thank you so much for pointing me in the right direction 😮) Hi
. I missed this exchange earlier, but now want to say I had chance to look at your video and really appreciate the effort you put in to helping people with RA (and other conditions) navigate workplace rights and options for if work becomes an impossibility. My wife, Kelly Mack (a contributor here), does quite a bit of work on disability rights issues (she was diagnosed at age two, 47 years ago and has used a wheelchair since her teens). She also just recently went on disability retirement from her job after a pretty long and successful career. She sent me a couple of links related to U.S. disability rights/laws that may be of assistance (see: https://www.ssa.gov/disability and this one where you need to scroll down a bit to get to the disability information: https://www.nationaldisabilityinstitute.org/financial-resilience-center/benefits/). If you have specific areas you would like more information on she may be able to provide further places to check out. Wishing you the best. Richard (Team Member)
