Tl;dr My flaring autoimmune disease + kidney failure has left me at a super reduced capacity all year and is currently consuming most of my life.
I address this regularly with my colleagues but they are frustrated that I’m doing way less than normal so today my boss asked me to consider going part-time for 6 months until I get well – or come up with an alternative. That would of course include reduced salary and loss of medical benefits which is 100% NOT an option. What’s the right next move?!
Full health story I have Crohn’s Disease – an autoimmune where my body attacks itself and ruins my insides – that has been in remission for several years but I’ve recently found out the amazing meds I’ve been on are killing my kidneys. I’ve now been in stage 3 kidney failure for a year and just started treatment (many doctors, tests, insurance fights to get to this point).
The combo of the kidney failure (tubulointerstitial nephritis) and stopping my Crohn’s meds a few months ago have made the last several months hell.
It’s complicated but the gist is that I’m exhausted beyond anything I knew was possible, I’m in the bathroom 10-20 times a day passing just liquid – and LOTS of blood.
Every 2-3 days I eat a small “meal” (e.g. grilled cheese sandwich, plain pasta with some parmesan) but otherwise I’m subsisting on nutritional drinks (Ensure) & ramen noodle broth. I’ve lost 25+lbs since Oct 1. When I don’t eat solid food I feel weaker but when I do eat I bleed more and am in more pain.
Full work story I’m 1 of 4 full time employees at a nonprofit based on NY & work remotely from CA. I am a few months shy of my 10 year anniversary.
I have always been a hard worker but this year as I’ve gotten worse and worse my capacity is significantly reduced. Not only am taking off a lot for doctors/tests, I’m also slower from exhaustion, and interrupted constantly by the 10-20 bathroom visits a day. It’s awful.
Today, my boss and I had our normally scheduled 6 month review and I explained that while I more than understand the frustration of being a small team and losing so much time/work from one person there’s nothing else I can do. I specifically did not say I felt guilty or that I was sorry for it – just that I understood that it’s tough but also explained that I’m doing everything I possibly can and I really believe that.
She just sent me a follow up email that said:
Looking forward to connecting again Monday on your thoughts re how best to align your capacity at this time with the organization’s needs including the option to reposition into a part time role to make sure we move forward in way that works best for all and that is sustainable – and that ultimately has the greatest impact on our mission!
This really pisses me off because she’s trying to make me feel guilty about the mission suffering but we are medical nonprofit serving disabled kids!!! If anyone should get it, it should be her!!
What do I do next?! I know that what she is proposing is illegal so of course I will not agree to anything. But I’m wondering if anyone has concrete advise/resources I can turn to so I make sure I’m saying the right things, leaving the right paper trail, using all of the resources I have available.
She also kept saying “move into part time OR come up with a viable alternative” on our call, as if it’s up to me to make up the balance somehow which is clearly impossible.