Should I leave my job and go on SSDI?
January 20, 2014 6:50 AM   Subscribe

I'm 44 and was diagnosed with stage 4 cancer several months ago. For 7 years, I've been the communications director of a small nonprofit. My ED has been incredibly kind in granting me extended sick leave, paying my full salary and benefits for the past three months while I went through chemo. Despite his generosity, I have been long planning to leave and don't want to go back to work at this organization. My job does not offer any kind of short or long term disability, but according to the SS website, the diagnosis of stage 4 cancer automatically qualifies me for SSDI benefits. Do I leave this job and go on SSDI while recovering and preparing to transition to another field?

Prior to the diagnosis, I was deeply unhappy and stressed out at this job, related to the extremely dysfunctional management practices of my ED. For at least 4 years, I have been actively job hunting and interviewing for communications positions at a similar nonprofit in my area, without success. Just before the diagnosis, I had decided to start obtaining certifications and education to help me transition into another field, not necessarily in nonprofit.

The treatment over the past few months was brutal and resulted in multiple hospital stays, including a few days in the ICU. Chemo ended a week ago and I don't yet know what the next steps are going to be. My energy levels are very low, I get exhausted easily, and just don't feel like I have the mental or physical capacity to deal with my ED. I don't miss the stress of being there at all and in fact, think it would be detrimental to my recovery to go back.

Stage 4 is terminal, and my oncologist told me the median lifespan following diagnosis is 3 years. While I intend to live well beyond that, I live in the midwest and my family is on the east coast, so going on SSDI would also allow me to go spend some time with my family while I prepare for my next professional move.

SSDI will pay me very little, but I do have some money put away and can get by for a while on benefits & my savings. I do not expect that this is the end of my working life and very much want my time on SSDI to be limited while I recover and prepare for next steps professionally, though I am pretty nervous about facing a job hunt in a related but new field in this economy. Hoping the hive mind can offer me some perspective/relevant info on SSDI, and a reality check on this plan in general.
posted by anonymous to Work & Money (16 answers total) 3 users marked this as a favorite
I'm not in the US. However, I am wondering whether your organization could keep you on extended sick leave or disability or whether you could take a leave of absence and go on SSDI. In your shoes, I think I would leave the job, but it would be helpful to know what resources you have, other than SSDI. Also, it is possible that you qualify for some sort of disability benefit, but, again, I'm in Canada. Most of the people I've know with Stage 3-4 cancer have gone on disability, so I certainly don't think there's anything wrong with doing it at Stage 3. I don't think a non-profit would hold it against you.

That being said, I do not know what financial resources you have. This is a tough economy. It is possible that you will get sick again (I have a friend who keeps going through minor to medium crises with her later stage cancer) and you might need disability or financial benefits. You may find this happens before you get a job or before you have been long enough to qualify for benefits.

You could talk to your non-profit about shifting down in your hours or even changing to a less stressful position with fewer hours. Perhaps two part-time EDs would allow for you to train the incoming person.
posted by Chaussette and the Pussy Cats at 6:58 AM on January 20, 2014

If you can honestly afford to go on SSDI, then you should do it. Go speak to someone at Social Security to understand exactly what you'd be entitled to and when it would start. Specifically Medicaid. Food Stamps, etc.

Hating your job and having high levels of stress will not help you heal. If being with your family and having the space to rest will help you, then you should do that.

Can you plan your expenses based on SSDI? Give up your apatment/sell your house, get rid of your bulkier possessions, etc?

Then, when you're in remission, well enough to return to the workforce, you can do so.

Don't count on using your savings while on SSDI.
posted by Ruthless Bunny at 7:00 AM on January 20, 2014 [4 favorites]

I'm sort of confused by the juxtaposition of information within your question. It sounds like you have been diagnosed with terminal cancer. All the rest of the information re: your job unhappiness, SSDI, diagnosed vs. expected life expectancy, etc., doesn't really matter. I have never known a person with terminal cancer who regretted quitting everything they were unhappy with. Connect with someone at Social Security to understand exactly what benefits you'd be receiving, use some of your savings to hire a flat-fee financial adviser to figure out a plan, and cast aside everything you can that stresses you out and makes you unhappy.

As an aside, the "median" lifespan measurement is bullshit and doesn't really tell you anything about what's likely. It's just the number in the middle of all the lifespans of people with your stage of your type of cancer. Your oncologist probably does have a better idea of your prognosis than just reporting the median to you. Don't be afraid to push your oncologist for more substantive information. It's your life, and you deserve to know how long you likely have left, so you can make plans.
posted by juniperesque at 7:12 AM on January 20, 2014 [8 favorites]

Stage 4 is terminal, and my oncologist told me the median lifespan following diagnosis is 3 years.

Concentrate on what you want out of the next few years. That's all that matters.
posted by mdn at 7:17 AM on January 20, 2014 [5 favorites]

Make very sure to contact a social worker/lawyer/financial adviser in your state to make sure there is no spend-down required in going on SSDI (the state usually kicks in some medical assistance via Medicaid programs) in your location, at your level of assets.
posted by blue suede stockings at 7:17 AM on January 20, 2014 [2 favorites]

the median lifespan following diagnosis is 3 years. While I intend to live well beyond that

A stage 4 terminal diagnosis really is terminal, your doctor wasn't using those words or that timeframe lightly. You can't count on the treatment for your cancer getting "better" in the short to medium term - you are probably going to have more treatment at least as unpleasant as what you have had already. At a certain point there is a serious chance treatment will be ineffective and you may be in a position where you need to decide whether you want to move onto palliative care.

You have not given us too many details about your specific case, so this may be inaccurate - but based on the details you have given you will be lucky to have 5 years where you could study or work a job without debilitating interruptions in the next 5 years. It is up to you whether you think a career change is worth it in that scenario.

SSDI would allow you to be with the people who you care about when you know for sure you have the time to spend, and it seems like you are not in financial risk in the short to medium term. At a certain point in your future either your diagnosis is going to become less positive, at which point you are going to care about a career change even less than you do now - or you may be very lucky, in which case, you will feel lucky and grateful for the time you have had.
posted by Another Fine Product From The Nonsense Factory at 7:17 AM on January 20, 2014 [8 favorites]

I have never known a person with terminal cancer who regretted quitting everything they were unhappy with.

Well, I must challenge that, a little. I too have just been staged up to IV, breast cancer that has metastasized to the bones. It's terrible! I've already endured three previous chemotherapy cycles, 3 major surgeries, and radiation. I will learn this week what is next.

I am thinking along the lines of the OP too right now. However, there is comfort in routine, and it's scary to leave your life behind. "Quitting everything they were unhappy with," is a tall order, especially when finances are involved, no? Especially when quitting might mean loss of structure, day organized around work not sickness, familiar faces, etc. Lots of thinking and planning are required, and maybe, since it's still life being lived, compromising.

I don't know. I'm thinking on it too.
posted by thinkpiece at 7:29 AM on January 20, 2014 [13 favorites]

I would. My mother got a stage four diagnosis about six years ago and it was the nudge she needed to retire and actually get to enjoy some of the things that she was saving for later. It worked for her. She had always been a bit of a miser, planning to live until she was 100 years old and when it began to look like that was statistically unlikely, she retired early and did more of those things now and she's been very happy doing it and a bit of an outlier as far as what they had originally predicted her prognosis to be (and she's just flat out been lucky, too - this article by Stephen Jay Gould's The Median isn't the Message should be required reading for people who get similar prognoses).

So only you know if you'll be happier with the routine and contact and purpose of your job or if it's the thing you've been doing just to pay the bills. I think if faced with a similar thing, I would likely go on disability, find a treatment center nearer to my family and do more of the things that I had been putting off until later. SSDI is not a lot of money so I'd make sure your budget will allow it if it turns out you have a better outcome than the median. Best of luck.
posted by jessamyn at 7:40 AM on January 20, 2014 [9 favorites]

A colleague's husband was just granted SSDI, and it took more than 6 months to approve. I don't think there was a spend-down requirement, and they own their home, so are not destitute, but his condition prevented him from working for several years and finances were becoming a significant issue. I think this category of payment is more about your disability and less about financial need.

My colleague put off applying for SSDI because she thought it might depress him to be officially "disabled", and since his disability is severe depression, that was an important possibility. He's been suicidal in the past, with a couple of documented serious attempts. He had uncontested medical evidence and supportive psychiatrists, so there wasn't actually any push-back from Social Security. It. just. took. months. and. months.

The good news is that the payments are retroactive to the date of disability, so there is that. I'm not sure how they determined that date, but it has resulted in a significant payment to them. Good luck to you.
posted by citygirl at 7:55 AM on January 20, 2014 [1 favorite]

I certainly would, in your shoes. But I think a more significant thing is that fact that your question reads, to me, like someone who really wants to make this decision and is looking for affirmation.

Do it. You wanted out of the gig when you had energy. Now you're tired and somewhat down and should want even less to be somewhere that makes you feel crappy. Find the appropriate resources/people to help you determine how doable this course of action is for you and do it.
posted by phearlez at 8:37 AM on January 20, 2014

Go speak to someone at Social Security to understand exactly what you'd be entitled to and when it would start. Specifically Medicaid. Food Stamps, etc.

You should also look very, very closely at any changes in health insurance benefits. Because no matter how the next few years play out, it sounds like they will be very expensive from a medical perspective.
posted by rtimmel at 9:31 AM on January 20, 2014

Yes, take a look at your health insurance benefits. That's why I was suggesting extended illness/disability, if you have it, on top of the income it might provide.
posted by Chaussette and the Pussy Cats at 9:33 AM on January 20, 2014 [1 favorite]

SSDI recipients are elegible for Medicare after a 24 month waiting period. This is to prevent people from dropping their insurance and hopping onto Medicare - the same waiting period applies for both Social Security and for Social Security Disability.

I'm not sure if the date the disability occured starts the 24 month clock, or if it's the date SSDI is approved. That would be a question for Social Security itself.
posted by citygirl at 11:17 AM on January 20, 2014

seconding the recommendation to see a disability lawyer to find out specifics of what you are entitled to and to help you navigate your health care coverage.
posted by quince at 11:45 AM on January 20, 2014

Hospitals often have social workers who can help you work through disability and health insurance paperwork and scenarios.
posted by the young rope-rider at 1:31 PM on January 20, 2014 [3 favorites]

Try the Social Security website for information as well. You may have to be without employment for a period of time but the worst that can happen with an application is to be told no. And even then you can appeal that. The real question seems to be whether you have the funds to wait for the SSDI to kick in and if it doesn't what then. I say with your diagnosis, take the chance, as there is nothing worse than being in a job that you hate while you live with a condition that wants to take your life away. Time to live.
posted by OhSusannah at 1:55 AM on January 22, 2014

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