I am so incredibly disappointed right now. Though my employer was supportive through the discovery stage and gamma knife surgery. Now post surgery when I really could use some flexibility I feel like they are working against me. I could go off on a leave of absence and collect disability but I didn’t want to. I have asked for a medically supported reduction if hours and they are fighting me on it. I want to cry. I am trying so hard to follow the recommendation of my doctors and live my life but find it very difficult when some people treat me like my brain may explode at any moment.

STEPHANIE i KNOW EXACTLY HOW YOU FEEL. My coworkers and bosses treated me like a qween at first but a few weeks later they let me go. They acted like I was contagious or something. I am currently unemployed and tring to get on disability. You learn real quickly who you can count on sometimes. Best of luck Pamela

Hi Stephanie,

It’s really hard to convey how difficult recuperation is…I think people expect you to just snap back, especially if there isn’t a visible disability.

My advice is first, to look into the laws on medical leave, and cite by name any laws that exist to protect you. My husband’s employer wouldn’t even talk to him about changing his schedule until we looked up the wording of the Americans with Disabilities Act and quoted it to his HR rep: “I’m requesting a reasonable accommodation as covered by the ADA.” Then he was treated very seriously and was given what he needed. The company won’t want to be in violation of the law, so if there’s a law protecting you, let them know that you’re aware of it.

Second, look for a foundation to be your ally. There might be an organization serving people with brain injuries that can advise you, or that can advocate on your behalf. If your AVM gave you seizures, you can call a group like Epilepsy Ontario (http://www.epilepsyontario.org/client/eo/eoweb.nsf/web/Home) and ask for their advice and advocacy.

Last, make sure that you really don’t want to take the leave/disability. My husband did himself a serious disservice by getting “back in the saddle” a few weeks after surgery. He wanted to get “back to normal” as quickly as possible, but your brain needs its own time to recover. If the idea of disability is bothering you, keep in mind that disability payments are just something you use when you need them; they don’t change who you are or say anything about your future. Your situation might be totally different, so of course I’m not suggesting that you take the leave; I just want to make sure you’re picking the best option for you.

Good luck!

Hi Stephanie,
I too had a similar experience after my 2nd surgery - supportive co-worker’s & employer before surgery, then afterwards the ‘support’ soon wore off & it was devastating. :frowning: It also didn’t help by pushing myself in going back to work too soon - our brains truly need time to heal & unfortunately most employers don’t 'get it.'
Along w/the other great suggestions, it may be helpful if one of your drs. could validate your need for limits/time off in writing.
Take care,

Hi Stephanie!

That’s awful. Does your employer have a human resources department? If so, I’d make an appointment to talk to someone there about exactly what’s going on and what you need. Do you know anyone in HR who’s particularly nice and easy to talk to?

I don’t know how employment law works in the US, but it always helps to know there’s someone in your corner. Best of luck, and take care.


Stephanie, my thoughts and prayers are there for you!

Thank you for your kind responses. I seen my family doctor yesterday and we discussed the frequency of my focal seizures and the triggers. Being over tired is my biggest trigger. The shift in question is 32 hours (6 hours of it is considered a rest position where I can sleep). I have asked to give 12 of the overnight hours to another employee. I am the one who loses
pay. It’s better for them but they are being difficult. It is a unionized position and I’m certain the union will not have a problem with me giving up hours providing it is written up properly. It’s just one more thing to worry about. When I was diagnosed the nuerologist stressed how important it was for me not to let my AVM run my life. I really try but moments like this make it so difficult.

yea buddy i used to love my job. i havent been able to do it since sergury, it sucks so bad. i dont kno if i will be able to ever do it again. well i will have to get my seizures under control first. if i smoke pot i feel they are under control but i cant work all stoned to so not sure what to do.

Stephanie, are you aware of FMLA (family medical leave act)? It’s a way for you to take the leave that you want and need but still keep your job. Of course, you won’t be paid for it, which is the sucky part, but you will still have your job. Talk to HR, then talk to your union rep. I’m sure the union can probably help you. Good luck!