what to disclose to employer around long covid / disability?
March 31, 2024 1:30 PM   Subscribe

My doctor suspects I have long Covid. Please help me think through the pros and cons of disclosing this to my employer, a private company in California. What are my legal protections? Have you disclosed this to your employer with positive effects? Who should I be asking about disability support?

I work at a private company in California as a full-time employee with benefits. I’ve been at this job for less than a year, and still have some months to go before hitting my 1-year mark. I caught Covid after I started my job.

My performance has been fine despite me dealing with long Covid symptoms on and off. (I am addressing symptoms with my care team.) I’m definitely recovering but sometimes things also get worse.

Work is stressful, coping with the fast pace + high demands has been hard, and sometimes causes my symptoms to get worse. I know that rest is important and I’ve been trying to prioritize that.

My employer is asking me to take on more responsibility despite me only having been there for a few months (and it not being really in my job description).

Employer has been historically somewhat but not entirely accommodating when people ask for accommodations. Quitting job is not an option, and I don't want to job-hunt again until I'm past a year at this company.

The overall question is basically “what do I do?!” but I tried to break it down into sub-questions; answers to any of these would be very helpful:

1. If I get a formal diagnosis of long covid, do I have any protections under the law? I think ADA applies here but I’m not sure?
2. Is there any benefit to disclosing this diagnosis to my employer, or should I be as vague as possible? What accommodations are reasonable to ask for?
3. It’s my impression that I have few protections before the 1-year mark. I’m not entitled to FMLA or long-term disability insurance. So the right thing to do is try and make it to the 1-year mark. Is that right?
4. I have long-term disability insurance (LTD) through my employer. After 1 year, if the long covid progresses and I become too disabled to work, would the LTD apply? On one hand, long covid could be a “pre-existing condition” because I developed it before my 1-year mark. On the other hand, it could be a new condition because I was clearly not too disabled to work before my 1-year mark.
5. If you’ve been diagnosed with long covid and disclosed it to your employer, did it help?
6. Are there specific people (lawyers, orgs, etc) who I could hire to help out? Or support groups for people with long covid who are holding down full-time jobs? I don’t really know where to start. I would be willing to pay for a remote or in-person disability support person.
7. Any suggested wording for gently pushing back when employers ask for more (leadership/responsibility/travel) etc without disclosing disability on my end? I like this but think it may need to be tailored.

DM me if you want more information about my specific industry, insurance providers, or location. Thank you so much!
posted by nixtamalization to Work & Money (5 answers total) 4 users marked this as a favorite
I'm not trying to be unhelpful or discourage getting info here, but just to provide some additional thoughts.

You won't be able to get certain answers here about some of these things, and you may get some misleading or incorrect information from others experiences, specifically in relation to the legal stuff. Your LTD policy and related documents will determine some of this. Just knowing the provider isn't enough, it's the details of the policy, which vary. Your employer's policy will be some. State laws matter, as well as specifics - for example, sometimes the size of employer dictates duties to accomodate, and type of employer. It depends on both statutory law and how it has been interpreted. For issues touching on the law, you should look for reliable sources of info specific to your situation - people more familiar with your location may be able to point you to some.

From having a post-infection/post-COVID condition myself, I can tell you that issues build up when you are strained. I would be very defensive of your time and cognitive resources.

If you are concerned that you may need to take advantage of disability benefits or ask for accommodations that are a deal breaker for your ability to work, despite that it is expensive, it might be worth talking to a lawyer or legal clinic. If you were to do this, you can minimize the cost by researching beforehand, having documents organized (employment contract, employer policies, disability policy/benefits statements, perhaps medical records or at least knowledge of what your doctor recommends with specifics). Bear in mind that a lawyer is the only type of consultation that can't potentially be used as evidence in some way if you do apply for disability.

Remember that HR is not your friend, and keep any enquiries non-specific. You might not want to disclose anything without having a good idea about what their legal obligations in response would be.

The Job Accomodation Network is a good resource for ideas about types of accommodations and how they might be phrased.

I am a lawyer but not in your jurisdiction and not your lawyer, this isn't legal advice.

While the answers you get may seem overwhelming, you will get through this! Look after yourself first, above all. I can tell you from personal experience that it's better to not be able to do a job than to work so hard trying to keep it that you become unable to work anywhere.
posted by lookoutbelow at 2:16 PM on March 31 [9 favorites]

I can't speak to your first question and I have never had covid, but I can certainly Google:

Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557
COVID-19 and the Americans with Disabilities Act
What You Should Know About COVID-19 and the ADA, the Rehabilitation Act, and Other EEO Laws
Approving Workplace Accommodations for Patients with Long Covid — Advice for Clinicians

Otherwise, I can give some vague advice from going through disability stuff this year.

I've been told NOT TO disclose a diagnosis to my employer. I had to get a letter from a doctor saying what my issues were--specifically "give a list of her limitations and how long they will be issues or is this permanent" was repeatedly asked for, but the doctor refused to do that in my case (to be fair, we don't know). Once you get an acceptable vague "this is the issues this person has" list from the doctor, that's where we proceeded from there.

I actually didn't think Ask JAN was that helpful for accommodations for me and my problems, and doctors refused to give me any assistance on asking for any or even suggest any, so you're pretty much on your own for determining those for yourself. We have a disability services office where I work that I've been working with, no clue if that's an option for you but I'm guessing not. I don't know on what's advised for long covid, but it sounds like suggested accommodations would be to go part time and rest is more of what you're looking for.

I presume you do need to make it to the 1 year mark for FMLA and that your employer has to qualify for that. Here's the FAQ for FMLA.
posted by jenfullmoon at 2:48 PM on March 31

I am not a lawyer, but I have been through this process myself and guided many others through it as well, at multiple private tech companies in California. Based on those experiences, here are a few things that I think will help you understand your options and sort out your next steps. Your doctor's willingness to work with you is a key part of any of your options, so I hope you are lucky enough to have that -- if not, this is still doable, but you might consider looking for a new doctor.

Some of these things may end up overlapping for you depending on your needs and situation, and if you're very lucky your company may have additional policies and benefits that help.

Company policies and benefits: Read your company's benefits policy and leave policies as soon as you can. If these aren't documented anywhere you can get to, expect this will be a bit more difficult, and consider having a discussion with an employment lawyer sooner rather than later. If there are documented processes in place, you may not need to talk with a lawyer unless your company is very reluctant to work with you or you get the sense they're starting to look for a reason to fire you.

Accommodations under the ADA: You are protected to an extent by the ADA if you make a formal accommodation request: they have to engage in an interactive process with you to find a way to make "reasonable accommodations" work, and they cannot fire you for making the request (which would be discrimination). If you want to continue working full-time or mostly full-time but with accommodations in place to make things easier for you, this is your best route.

You will start by talking to your doctor about what accommodations you need (the Job Accommodation Network has already been recommended above and it is a good resource, if incomplete and not easy to navigate), and asking if they'd be willing to write a letter describing their recommendation for that. This letter will not include a diagnosis, and depending on your doctor's policies, you may not even need a formal diagnosis (but it helps). Then follow your company's process for submitting the request, or if that doesn't exist, email HR to start the process of requesting accommodations under the ADA.

Note that this does NOT have to include disclosing your condition or diagnosis if you don't want to, and I would recommend you don't disclose, even if you feel like people would be supportive. Avoiding disclosure protects your reputation as well as helps protect a bit you from HR/leadership thinking they know better about what you need than you and your doctor do and letting that influence their willingness to accommodate.

Formal requests give you the greatest protection, so even if your manager or company have been willing to be flexible with your needs, I strongly recommend making a formal request to protect yourself from new management or the company trying to wiggle out of their obligations.

Disability insurance: State disability (CA SDI) and any disability benefits you have through your insurance would apply if you need to stop working for the short- or long-term to take care of yourself, but still want to get paid part of your salary. When that kicks in and what it covers will vary, and you should check your insurance benefits and read up on CA SDI to understand your eligibility and benefits. The paperwork for this is a little more involved and your doctor will have to fill out forms that include your diagnosis, but those will only go to your insurer and the state, not your employer.

FMLA: FMLA is a federal law that will protect you from getting fired if you need to stop working to take care of your medical needs, for up to 12 weeks continuously or intermittently. That means it can cover stuff like "a day off each month for treatment" or "half-days on Thursdays for treatment" as well as "12 weeks off work for recovery". It is not a paid benefit. If it applies to your company, it will not kick in for you until you've been there a year. It would also involve more forms with your diagnosis, to the gov't not your employer. The FMLA FAQ already linked is great.

CA also has a similar law and this FAQ is a good place to start -- but for most people FMLA is the critical law.

This is a lot but it is navigable, and I wish you the best of luck getting what you need!
posted by rhiannonstone at 3:09 PM on March 31 [2 favorites]

Especially if you're in the Bay Area, you might want to ask the Center for Independent Living in Berkeley for referrals.
posted by hoyland at 3:28 PM on March 31

For the pushing back on additional work part, one strategy is to phrase it as a prioritization discussion. In the end, you are the expert on your own capacity. It's not in their interest to have you assigned work that you can't do on time or that will result in you burning out and them having to reassign it. Yet management doesn't always deal with these things well – it defaults to "hey can you do x?" And relying on the employee to suss out how to respond.

So one way of turning the conversation more productive is to view it as an exchange of information about what needs to be done, how much you can do, by when, etc. From your side, it's best to work from a realistic perspective, with a margin of error, and accounting for good and bad days (not what you'd like to be capable of - avoid the seduction of wanting to seem like an all star by promising to get more done than would be good for you). And framing it with a problem-solving attitude helps.

So if someone says "hey, can you do this thing?" Responding "I won't have time to complete that until [timeframe], unless there's something else that is a lower priority". If there is something you don't think is as important, suggest it. And for ongoing responsibilities, if they're asking or telling you to do some thing, saying that you wouldn't be able to do that unless you set aside [x, y, z things in your job description]. Being concrete and specific helps. It's easy to forget that other people often don't know what you do all day and many don't bother to think about it.

One other helpful tip potentially is to make a habit of sending progress updates on the stuff you've finished and your upcoming priorities. Then if asked to do more, you can refer back to your upcoming list and ask what should be deprioritized.

Just a couple extra thoughts. If you asked another question here targeting the work responsibilities part I bet people would have more helpful tips.
posted by lookoutbelow at 11:55 PM on April 1

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