Would love to hear how people cope with dealing life with a disability that affects them hugely, but finding other people lacking in understanding as your disability is invisible.
I returned to work, a job I loved and have been in for 34 for years, after 2 years off following major brain surgery for a large aneurysm. My return to work was out of desperation really as I wasn't well enough, but was going through horrible divorce (30 years married) and I was struggling financially. My phased in period was 5 weeks of sitting in a peaceful office reading and catching up. I felt good to be back at work and warmly welcomed by colleagues and customers.
Then after the 5 weeks I was expected to hit the floor running. Neuropsychologist provided a list of suggested support to help me manage my job and help me with my cognitive function issues. None of that was understood or carried out by my workplace/manager/colleagues. A break was supposed to be provided when fatigue hit me. That wasn't provided for months and when it was introduced it was 15 minutes when it suited them rather than when it was required by me. I also had to work longer to make up for any break. Pressure was piled on me - targets for sales etc in a financial institution when we aren't supposed to have targets, but... Support from colleagues turned to resentment. They saw me looking fine (I do my best!) and back after 2 years off so I must be fit and well. Nah. I am not the person I was before and I doubt I will be again.
A particularly bad week stress-wise (coping with a court hearing miles away from home re divorce and not allowed the day off that I had initially been granted) led to me having a stroke at work on that very busy Bank Holiday Saturday. A year ago yesterday. I have a "keep on keeping on" way and I showed no upset or stress at work. I went in without complaining, with a smile on my face as that's the way I am. That Saturday I had a numb tongue, face, right arm, hand and even my leg all down the right hand side, but I put it down to fatigue from my brain surgery issues. People noticed I wasn't my usual self - my writing was appalling, I dropped a full mug of coffee, my speech was befuddled. But no-one suggested I take a break, go home or call an ambulance. My son called an ambulance once I got home. I was whizzed into hospital etc and my stroke was shown to me on a scan the following week.
I've been off work again since and I have been really trying to get back to "normal". I'm not.
Occupational Health have me as "unfit for work" for the foreseeable. I applied for medical retirement and got rejected (again - was rejected last time too). I'm coming up to a 3rd stage meeting with Big Manager and HR and I have no idea what to expect. It seems to be a case of either going back to work and giving it another go - I would HAVE to insist on the support I need and HAVE to make my disability visible (not my usual thing). Or... be told my contract is terminated as I'm unfit for work. So... if that happens, what do I do? Look for another job when that's a bit of a worry as I'm not capable of doing the job I have loved doing for 34 years. How the heck would I manage with this poor old brain of mine in learning a new job? If too ill for work, but not ill enough for medical retirement... What the heck do I do? Any tips?
I would hugely appreciate any tips. I would also appreciate hearing your experiences. How you've been treated, how you've coped, how you are now.