AVM & Work

I count my blessings, including the fact that the Almighty blessed me with 2 beautiful kids with an active AVM. And I’m grateful I can work. Which was one of my conditions of employment when I interviewed for my current job - I required flexibility with respect to where I worked from (office or home) and that was because my kids were toddler and infant at the time. But turns out the flexibility I needed was for my headaches. In the last couple years I’ve had micro hemorrhages and learned about 6 months ago I now have to have the AVM treated because of built up pressure in the brain. Here’s my kicker - after a year of working flexibly with no issue, least of all performance. But my manager revoked my arrangement because my colleagues (just 2 of them) didn’t like it (mind you they have their own flexible arrangements far better than mine). He’s made my life miserable. All because I called him out on the double standards. He’s picked on me for having an AVM (he doesn’t understand it, which is ok, but tells people I have “brain bleeds” like that’s so normal) and told me to put a peg in the sand with it :joy:

I’ve been asked to motivate for my flexibility and that my neuro would need to motivate as well, which he did, only to be told they don’t accept the motivation and will give me 1 day a week at home because he does it for other staff. Seriously stupid to not be able to apply yourself in each situation. So a couple months back he had a go at me - was verbally abusive and that was it for me. I was seriously ticked off. We’re now going through a grievance process I started when I reported the behavior and all ways they’ve come out ignoring the AVM and claim he’s doing the right thing.

I need my job. But how an adult cannot understand what I’ve explained in as simple English as possible but can understand someone being tired in traffic is beyond me. Yet he knows everything. From the angio recently done to the pressure built up, to embolization being booked but had to be postponed, this is where I’m at.

Did I mention they had me chat to their occupational health practitioner, who within 3 minutes of our meeting and not knowing why I’m there, said he’ll never recommend I work from home a couple times a week. This was before and after he reviewed my surgeon’s motivation. If I haven’t already mentioned, they have a habit of lying, continuously, but conveniently forget. They’re trying to work me out of the company, my manager at the very least until I found out how deep it actually goes. I’m fortunate I can work, but the unpredictability of the headaches and the built up pressure I can’t do much about - whichever way I tried in offering solutions - and now I sit in the middle of a grievance and knew everyone would take his side. They completely forget that there is a medical condition here and no one has a cure.

If you’ve made it to the end of this, thank you. I sincerely appreciate it. I should add on I guess that I’ve raised a grievance also of discrimination - for last 6 months I was told I shouldn’t work because I have little kids as well as you can’t work from home because you have little kids and they’re a disturbance (over a year of successfully doing so thus far). Might I add that one of the people pushing him to do this is a woman who’s opinion he takes way too seriously.

There’s probably a lot of things I’m forgetting right now to mention, but I needed to see if others are experiencing the same and how they’ve managed (I know we’re all in different countries).

PS: I even located people he’s done this to, actually assaulted but the grievance was buried by the powers that be. Oh, and apparently shouting at me once and degrading me is just “once” :woman_shrugging:t3:

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@Suraya I am so sorry your boss and work are not being supportive. I am also sorry about the headaches. I live in the USA and everything you are saying is harassment and discrimination.

Here is we have a doctors note they have to accommodate. But still people manage people out of their jobs. I went back early against drs orders but ended up having to leave perm cause of my constant head pain. I had also had a massive rare stroke called CVST months before my AVM and my CVST stroke ended up causing my AVM - My work which I had worked for 22 years and had a great career but my last boss was terrible and sexist used it to try to make my life hell. They actually put me on a different type of product - I worked for the largest discount broker dealer and had been working on Fixed Income trading my whole career and then when I came back they wanted me to be on stocks. Which actually was great cause I had been working in stocks since I was ten so it was super easy. They had no idea of my past experience cause I did it all before college - my mom worked on the pacific stock exchange and people would hire me during the summers .
Anyway here you need to document everything and I would talk to an employment lawyer. Also if they are making different rules for you this would also get them into trouble here.
Stay strong and keep us updated on your AVM- We are here for you- We understand -
Hugs Angela


That’s pretty tough. I can only wish you the best with the grievance or tribunal. Some people are like that and I’d say don’t deserve to have you do work for them.

My only parallel is that I bought the house where I live because it is part way between where I work and where my wife works and it is on a bus route. My thinking was that if the car developed a serious problem and I had to do without it for a while, I could always get the bus to work. However, I found that when I discovered my AVM it was me that “didn’t work” (by which I mean to say I was not safe to drive) so I ended up catching the bus to work for that reason – me, rather than the car!

Just carry on doing great work and I hope you get the right outcome.

Very best wishes,


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Thank you for your support Angela! So sorry to hear you’ve had the same, if not worse, experience. We just concluded the process and no surprises, they found no fault. I guess it is what it is… can only hope it gets better, but not holding my breath. Thank you for your support again and for sharing :hugs:Maybe one day the rest of the world will understand.

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Thank you Dick. Unfortunately the outcome wasn’t in my favor, but things seem to be a little better - only I have no trust or faith that it’s genuine. For now though I’m doing just that - the best I can do.

It’s the only thing you can do: show them they are wrong by being brilliant. I’m quite sure people with all manner of impairments have to prove they are way better than the average Joe to get on a similar footing. It isn’t fair but it seems to be the way it is.

Sending you strength and very best wishes,