Hello all,
I received my chiari diagnosis last week and was just wondering if anyone has experience working as an attorney, or in a similarly demanding field, and managing their diagnosis? I am a new attorney (just graduated law school this year) and am worried about what this diagnosis means for my career. I’m also open to any advice on how to discuss this with my employer and what accommodations people found helpful!
Hey @Paytpayt ,
My name is Merl. I’m a member of the modsupport team here on Ben’s friends. I haven’t been diagnosed with chairi as such. I have another little nasty blocking the aqueduct above the spine, reducing/blocking the flow of CSF from the skull. From all reports, having some similar symptoms to chairi.
An issue with any neurological diagnosis is often how the effects affect one individual compared to another can also be very individual. If you read some members experiences with medicos you can find that some medicos are of the opinion that if that tonsil is less than a certain size, the patient’s symptoms will be minimal. But reading other’s stories, some report much smaller tonsils but no end of issues.
I was working in a fairly high pressure role, running a youth accommodation program when I was first diagnosed. I can’t pinpoint when my first symptoms appeared. I’d had odd/weird effects for many years, but nothing identified. For me personally, the initial diagnosis was shocking. It was recommended I have surgery. The surgery was to ‘fix’ the issue. It didn’t fix it at all. In fact, it set off a cascade of issues and I’ve since required a few neurosurgeries to try and manage it all.
Managing around my symptoms pre-surgery/ pre-confirmed diagnosis was normal for me. I simply thought I was just having these weird sensations, and I’d lived with them this long, so… …I just continued adjusting to manage. But then one day I’m driving down the road and the lights went out. I couldn’t see. That was my trigger to investigate ‘just what is going on?’. Post surgery, all of my body’s normal tolerances were reset to zero. Tasks that were formerly simple or easy were a marathon. My stamina was nil and I could ‘burnout’ very easily. My temperature control was a mess. I’d sweat when I got cold and hot weather drained me in a flash, it was awful. My employer couldn’t make many accommodations. I had to monitor and regulate everything for myself. I couldn’t say ‘at 3pm I’ll be symptomatic’, it just hit me like a ton of bricks at any time. I could push my limits, but there was always a consequence for doing so (usually in agony, with a headache sent from the gates of Hell). I became SUPER refined in reading my body’s signs. When my body said 'Laydown or I’ll put you down…" I soon learnt to listen or pay the consequences.
Slowly but surely, I got myself back into some sort of routine and had a few years of ‘manageable’, not great, but manageable. Then in 2013 things took a sharp dive. I required further surgery, and this REALLY messed me up. I tried to use the same strategies to recover, only the more I pushed, the more my body pushed back. I thought “This thing is not going to beat me…” I ignored those signs and kept pushing, convincing myself I was building stamina. Something went ‘POP’ and I found myself back on the surgeons table for my 6th neurosurgery. That surgery REALLY messed me up and I’ve been unable to work since. As I say, that was 2013, and still today I’m on a seesaw of symptoms, daily. I’ve often said “Some days I can leap a tall building in a single bound (OK, so a ‘bit’ of an exaggeration). But then some days I’m lucky to even crawl out of bed”. I never know what today will throw at me, I just have to be prepared to deal with it.
So, that’s a bit of my story on this journey, but there are many differing ‘routes’/experiences others can have and each can be VERY unique.
Hope it helps
Merl from the Modsupport Team