Should I Stay or Should I Go: The Disability Decision

The calendar says it’s fall, and even though I live in Florida where the temperatures are still topping out in the 80s, the humidity has returned to a comfortable level and I no longer feel like dying as soon as I go outside. This is the time of year when I should be starting to feel better — lighter, less creaky, less tired. This year it’s not happening for me.

I was diagnosed with multiple sclerosis in February 2004, although I suspect I’ve had it since the early 1990s. Since my diagnosis, I’ve been on Copaxone, Rebif, Avonex, Betaseron, the Fingolimod trial, Tysabri, and, currently, Tecfidera. They have all worked for me in some way, but I tend to develop strange side effects and/or build up tolerance to medications, so I have had to move on from each. My presenting symptoms were numbness in the left side of my face and fatigue. My current symptoms include fatigue (which, since it’s like fatigue on steroids, has a special name of lassitude), depression, essential tremor, nystagmus, and My Stupid Right Leg  which occasionally goes numb, goes weak, goes heavy, feels like it’s burning, goes spastic, etc.

I have been fortunate to be able to continue working full time. I am a solo librarian, meaning I manage and run a small special library collection alone. The library is open to the public, so I get all kinds of people in throughout the day. I absolutely love my job and feel like I’m providing an important service to my customers. Up until now, except for my absolute worst symptom days, I’ve been able to power through my work days with little fuss. Until now, I didn’t worry about being able to get to work or, more troubling, being able to get home from work. I have finally started thinking about disability.

There are so many things to think about when you start considering disability. Should you just cut your hours? Maybe go to part time instead of full time? What if you cut your hours and you still can’t manage? Should you just bite the bullet and go on full disability? I’m fortunate because my employer provides both short-term and long-term disability insurance, so I would still get 66 percent of my current salary, but what about my other benefits? How will I provide health and dental insurance for myself and my daughter, since both of us are covered under my employer-provided policies? My husband could pick us up under his work insurance, but when would that take effect and how much would that cost us? It’s like the most mind-crushingly dull, complex word problem from math class, only this word problem is vitally important to you and your family’s health and wellbeing. Online benefit planners that those offered from the Social Security Administration and the National Multiple Sclerosis Society can help by identifying the data you will need to crunch these numbers.

Number-crunching aside, there is another side of the Big Disability Decision that I was not anticipating, which is the guilt. My husband works in behavioral health and sees people every day who come in looking to receive SSI or SSDI benefits for themselves or their children. Some of these people have legitimate claims, while a few seem to be malingerers, looking to game the system. While I know intellectually that I have a chronic illness, that there is not currently a cure for said illness, and that it is slowly getting worse over time, I still feel like I don’t deserve to stop working. Yes, I miss days (more and more of them, lately) because of my symptoms and yes, some days when I do work my full shift I cry with pain and fatigue on my way home and collapse on my bed, spending little quality time with my family, but I can still work, sort of, right?

My husband is supportive and says we’ll get together, go over the Big Nasty Word Problem of finances and insurance coverage, and see how we can make things better for me. Then he asks me what I would do all day if I didn’t work. Well, if I didn’t have to drive 45 minutes each way every day in rush hour traffic, manage the reference desk, the accounting, and all the other day-to-day tasks of a solo librarian, I would have the time and energy to do housework, make dinner, grocery shop when I have time and energy to do so, and take rest breaks as needed. I could probably handle the household finances better too, not having to do them at night when my brain is already fried from a day at work. I could enjoy my increasingly rare good days and go exercise. When I think about this, it’s obvious — filing for disability is the way to go! But. There’s always a but.

I like my job. I enjoy helping people. I’m good at what I do. I don’t want to stop doing what I’m doing, but it’s getting to the point where I have to admit that I can’t do it all the time. I was raised to work by two parents who had steady jobs they didn’t enjoy, but went to because That’s What You Do. It would be easier for me to leave if I had a generic McJob, something I did just to get paid, rather than a career I love. On the one hand, I don’t want to leave because I love what I do, when I’m able to do it. On the other hand, my customers deserve someone who will be here for them on a regular, dependable basis, and that isn’t me, at least not anymore.

I’ve lurked in some multiple sclerosis message boards, and I know I’m not alone in my indecision. This is such an insidious creeper of a disease, gradually getting worse until you’re in my shoes (sensible, flat, good arch support) and wondering if now is the time. I’m thinking now is the time. Or soon — maybe after my husband and I solve that Big Nasty Word Problem. I think the answer will be 42 — my upcoming birthday.

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