Ask HN: Diagnosed with a incurable chronic disease, should I tell my employer?

Depending on your disease, you may not have a choice. Take a sick leave and make some pretty thorough plans, get yourself a therapist + possibly a psych, and reconsider what your career path is going to look like.

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.

I will go against the grain and say that if it will impact your attendance, appearance, or job performance in any way it may be best to tell HR and your direct manager. If not, then I wouldn’t bring it up.

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.

No, they have no right to that information, and if medical accomodations need to be made you stick with that (i.e. what your Doctor says); you do not volunteer information because they will fire you for it.

It may not happen immediately, all they need to do is wait 6 months and it can't be considered retaliatory.

Never ever tell them. Ever. Nothing good can possibly come of it.

Every time I've shared my incurable illness it's exploded in my face.

Absolutely not. If you need accommodations, then maybe have that discussion, but until then, NO.

Incurable currently. Things may change tomorrow so, first of all, try to buy as many time as you can.

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.

No, don't tell your employer unless it directly affects you current workload. Even then be careful what you divulge. It's best to minimise what you share. Once you let people know, you will never know how the information will be used. Keep your situation ambiguous until you really can't keep it from them. You have the right to your medical privacy.

Strong No. Or at least “definitely not yet”. You have only just had the news and haven’t had time to fully process it, think through the ramifications and plan. Once the information is out you can’t take it back.

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.

Wait. Either you’ll get alot of support or some sort of awful corporate reaction. Either way, that sort of stuff is visceral and wears off after the initial news breaks. If they are going to be supportive, you’ll need it more later.

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!

What country? Age? In the USA companies often engineer their health care costs by pruning people with incurable chronic diseases. In Canada and many other countries they do not do this. At some point you may have to advise your employer. You may agree to a lesser work/lesser $$ - ultimately you might get a disability pension of some degree? If your doctor is able to advise the best path and use confidentiality to help you that would be good. At some point you may no longer be able to work, plan for that as best you can.

No way and no matter how friendly and supportive you think coworkers are. Only if accommodations are required.

I don't have any advice other people haven't covered.

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.

Your disease may qualify as a disability under the ADA. Would recommend familiarizing yourself with it if that's the case. As many have mentioned, the protections may work to your benefit: https://www.eeoc.gov/publications/ada-your-employment-rights...

No

And if you decide to, you should make that decision one day in the future when the shock has worn off.

You shouldn’t, but if you do tell them in writing only to protect yourself against being fired.

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.

Sounds like something that would be good to consult a lawyer about

are you in America? don't tell anyone. you'll be fired unfairly and your illness used against you.

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.

I wouldn’t tell them UNTIL (and maybe not even then) you’ve had time to reflect and decide some things for yourself and what you want to do.

Sorry to hear about your diagnosis. My wife is in her early 40’s and was recently diagnosed with leukemia. She’s still stage 0 (it was picked up from blood test results from annual physicals) and has no symptoms.

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.

Information can be used as a weapon against you. Even if not overtly used against you, it will change people's perception of you. You may be working with enlightened people but they are still people.

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.

No. It’s no business of theirs as long as you don’t need short term or long term disability

Yes, but only partially -- You don't need to disclose details. You should disclose specific limitations while letting them know that those limitations come from a disability, along with what accommodations you need to perform your job.

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.)

All this advice and nobody cares what the disease is?

It makes a difference.

You should consult with an employment attorney.

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.

No. And look into FMLA if you haven’t already. Among other things, it allows for a reduced workload while preserving your job

No benefit in telling your employer unless it directly affects your performance now.

I'm not sure I would tell my manager or team. I'd probably request accommodations from HR since medical limitations are considered a protected disability.

Lawyer.