Most likely I'll still be able to physically perform my job (SWE in big tech company) in the next few years.
Right now, I'm pretty shocked and I'm not sure I'll be able to work at my fullest until the situation stabilises.
Should I tell my manager and my team about this? or simply take a sick leave? I know there are laws against this, but I'm worried this plays against me.
I'm coming at this from the POV of somebody with MS. One thing to do now is pick up some kind of side hustle or project work outside of your main employment - even if it's only ~ 5 hrs a week. This way if you ever need to leave a W2 situation suddenly due to your disease, you can keep doing the side hustle and therefore avoid a gap on your resume. One of the hardest parts of my diagnosis was that since I presented during my final semester of grad school I had no health insurance and therefore had to not work for a while in order to be eligible for Medicaid so I could get my medication regime worked out for my symptoms so I could work. Explaining that resume gap has been hell - anything you can do to avoid looking like you did nothing is gold.
If your physical health is likely to go downhill in the next few years, you need to redo all of your financial plans. Your incentives have drastically changed.
The reason to tell is because it will provide you some legal protections and will make HR very hesitant to green light firing you. Second, if you do end up getting fired you have leverage to negotiate a better severance package. HR will want to mitigate any potential for lawsuit and offer a good package.
It may not happen immediately, all they need to do is wait 6 months and it can't be considered retaliatory.
Every time I've shared my incurable illness it's exploded in my face.
You need to collect more info about your disease before to take a decision. Disclosing it will tag you as unable to work anymore (when in fact you could just experience a minor decrease in your working capacity for a long time, depending on the disease). You may need allocate extra money to fight the disease. Therefore, one strategy could be to take support in your close circle or friends and family and keep the mouth shut for now in the rest of cases. If you feel strong enough emotional and physically to stand the job you may want to keep your income source and current life as many time as you can. Less changes will help to focus in the relevant parts and are better for the emotional aspect.
Alternatively, if the work don't has a special value for your identity, you hate it, or don't need the money, you may want instead to quit as soon as possible and spend more quality time with your family.
I have tremendous sympathy for your situation. It must be very difficult for you and on top of it you have now potentially this enormous secret. If you tell people it might help them to empathise with and make accommodations for you but honestly the risk is they do the opposite.
Someone close to me has a serious diagnosis, so this is real fresh to me. Once you understand what’s real, what isn’t and what the plan is, that’s when you tell people. If you’re going to need leave, file the FMLA stuff to give yourself aircover.
Don’t avoid counsel of your friends and family though. Dealing with something like this is hard on the soul, and you can’t bottle it up. People will want to help; take the help.
Good luck whatever you do!
I just wanted to say I'm really sorry you're going through this, and I hope the best people in your life are able to stay close to you, and that you'll find some more best people along the journey.
And if you decide to, you should make that decision one day in the future when the shock has worn off.
Assuming you’re employed by big tech in the US you’re likely in an at will state. That doesn’t mean they can fire you for any reason, as many reasons are illegal.
So if they do fire you, even if they claim there’s “no reason”, if dismissal happens after they’re informed, or after you request “reasonable” accommodation you want that sequence of events documented to show that your dismissal is in response to that information, which is generally illegal. Similarly your performance reviews might suddenly nose dive, to try to create “justification”. In any event document trail is something you need.
Are you in a country with legal protections for workers? tell whoever you want, it can only help your happiness in your workplace. Employer won't be able to fire you and you should get additional support from govt etc.
The hard thing about revealing your diagnosis is that the genie is out of the bottle. By taking time to process, you keep your optionality on what you choose to do.
If the disease affects you in a significant way then you may need to tell. But until that day comes keep it secret from your employer.
If you tell them nothing, managing your condition is all on you. If you tell them, they are legally obligated to help you, and you are protected from discrimination.
Could it play against you? Maybe... but it definitely plays against you to deal with such problems alone.
(I should say that I'm speaking about laws in US... that might be a bad assumption. Different locations will have different laws.)
It makes a difference.
1. If you get fired/laid off and your employer does not know, you might waive any federal protections you deserve by keeping your condition a secret.
2. There might be laws to protect you with your condition as it deteriorates.
3. HR resources might be available to you through the company or its health plans.
It's worth consulting with an expert on the legal status first, then moving from there.