Hello, been a while since my last post. My recommended yearly MRI and MRA are overdue and I have been approved to see a neuro so that I can be referred to that. I’ve already asked my boss 2 times if I can miss a few hours of the day for an appointment (first was a general check up; second was to be referred to a neuro). I ended up missing the whole day for the 2nd as my ride (I cannot afford a car right now) was too sick to take me back. My employers do not know I have an AVM. I sense they are going to tire of these visits. Do I just tell them? I fear of being fired for having an AVM. But if I just ignore this, I’m playing with my life. Experience for those discovering their AVM while working? How did you balance it? What makes my situation difficult I feel, is that I’m a temp to hire.
Certainly a difficult position to be in. I was fortunate and had comprehensive benefits through work and did not experience the struggle you are having. Being a temp hire adds some complexities for sure. I think that a lot of the managing will come down to what you are comfortable telling your employer. You wouldn’t want them to have the thought you were just not showing up. I would think, but based on my experiences in Canada, that if you were fired fro having an AVM, while able to perform the job that they would place themselves in a precarious position. If there is any employment agreement, contract, letter of offer or similar associated I would have a good look at it, most employers will want to put expectations in writing. I wish I could help more, but certainly worth looking into. Take Care, John.
I think it might be ideal to get some legal advice on the matter. I can only talk in the European context, but here, we are very well protected as employees from such discrimination and predatory behaviours. I am pretty sure they couldn’t fire you just for having the AVM, but I have heard a lot of things I didn’t think possible from the US.
My two cents is: you’ve had it for a while at least, it isn’t impacting your work performance and I assume you have the right to take a day off.
I did go through this, because I had a bleed and my performance was affected for about 6 months. I was afraid that I would lose my job and that would be the last thing I needed during that time. I did consult a lawyer and they reassured me of my rights and what can and cannot be done, so I was very upfront with the business about it in the end 
but again, Europe is different. Sadly, in the US I only know people on the East side, you should look for support and advice.
To a great extent, you need to judge what sort of employer they are.
If they employ over 50 employees, you’ll be covered by the FMLA for essential medical leave. I’d say if they’re a good employer and you don’t tell them that you’ve a medical issue that you’re going to consultations for, they’ll be thinking you’re rather unreliable: telling them about the medical stuff will help them to understand.
But if your employer is a small business, I get the impression that FMLA doesn’t apply.
I had a very constructive employer: we took health and safety seriously at work and I was undeterred at talking about my situation: it was easy to be open with them. My immediate boss was a bit dismissive of an AVM(!!) She obviously did a bit of googling and told me that very few people die from an AVM rupture: most people live their lives with an AVM without discovering it. My view is that if it is playing upon your health, that’s different from something that’s not having an effect at all. I felt quite ill from my AVM and it felt important to do something about it.
So I was very open at work and it went very well. But you need to judge your employer. If they don’t support you, there may be recourse through things like FMLA but that also requires you to go through the cost and time of legal actions, so it can be a long route. Make your judgement. It may well be best to talk to them, as it will help them to understand your need for absence.
Let us know how you go.
Richard
Late to the party but I worked for 19 years before finally fighting the system and losing. Employers that I was involved with, IT did not have the space nor accommodations to make it work. For glowing reviews quarterly on number of tickets resolved and had customers requesting me by name, but one stupid test, Microsoft Windows server, I could not pass. Got glowing reviews, had all kinda experience working in IT building Linux server boxes, windows server boxes building a network security system from the ground up, but I couldn’t pass the stupid windows server test. So they fired me. That let me know: they weren’t looking for the good employee: they were looking for the good metric. After that I had a stroke, went blind as a result, and got a dog, but the lesson in the story for me: make sure the employer your working for is looking for happy customers and not just happy metrics. Blessings as you continue!
The biggest question is what state are you. Every state has different laws. Is your temp work through this company or is it through a 3rd party company? As a formal manager and HR, those are the biggest questions before I can give directions
Hi Luca5304,
Firstly, I’m so sorry for what you’re going through. I completely understand because I have been where you are myself. I have an inoperable cervical AVM from C1 to C4 that has greatly impacted my life.
When I was working, I never mentioned it to anyone—not even my friends. I lived in denial for a long time. Unfortunately, that changed when I started having seizures at work and an ambulance had to be called. At that point, the cat was out of the bag.
After that, I sat down with my bosses, and I was incredibly fortunate. They were very understanding and allowed me to adjust my working hours several times as my condition changed, until eventually I had to stop working altogether. My neurologist also provided letters to support those workplace adjustments.
Like everyone else has suggested, I would encourage you to have an open conversation with your employer and see what accommodations may be possible. I’m in Australia, so I don’t know how your system works, but it’s worth having that discussion because you simply don’t know what the future may hold. As your situation changes, you may need to adjust those arrangements over time, just as I did.
That’s the unfortunate thing about AVMs—they’re so unpredictable. They can remain stable for years, change gradually, change suddenly, or never change at all. I truly pray that yours never changes, that your MRIs continue to be reassuring, and that you never need to reduce your hours like I did.
That is my wish for you, and for everyone living with an AVM: that it stays dormant, that you live life to the fullest, remain pain-free, and one day rarely have to think about it.
State is CA
I have decided I’m going to tell them and hope for the best.
When dealing with a **non-work injury" (AVM) for a temporary employee into California’s employment protection laws.
Here is how California law applies to this specific situation:
Fair Employment and Housing Act (FEHA) defines disability far more broadly than federal law, FEHA covers any medical condition or impairment that simply limits a major life activity. Because an AVM affects the vascular and neurological systems, it automatically qualifies for FEHA protections and reasonable accommodations in California if it requires work modifications or medical treatment (such as surgery, radiation, or avoiding strenuous exertion).
Temp employee has avenues for time off and wage replacement: *California Paid Sick Leave (SB 616): The worker can use any accrued California Paid Sick Leave (up to 40 hours/5 days) for doctor appointments, diagnostic scans, or recovery days. Mandatory Interactive Process, both the staffing agency and the host employer must engage in a timely, good-faith discussion to explore reasonable accommodations. The host company cannot simply inform the staffing agency to “end the assignment” to avoid accommodating a non-work injury or AVM condition. Replacing a temp worker solely because they requested an accommodation or disclosed a medical condition creates significant legal exposure under FEHA. Schedule Adjustments: Intermittent time off or flexible shifts to attend specialist appointments, MRI/CT imaging, or treatments.
My recommendation: be upfront, honest, and discuss everything related to doctor appointments, etc… Don’t make it personal, just tell them what the doctor said with paper work and you will be protected un California law. You will be fine.