How Disability Benefits Can Make MS Suck Even More
*scroll down for tips to manage the stress and stigma of the disability benefits process
One of the reasons MS sucks so bad is the stigma that comes with having a disability. This is especially enraging, because on some level I can accept that science hasn’t yet figured out how to fix my legs, but it feels like it should be easy for society to just get its shit together and stop acting like the chronically ill are second class citizens.
I’ve talked a lot about other stigmatizing aspects of MS–bladder and bowel issues, sexual dysfunction, and mobility aids—but I’ve so far stayed away from the D-word: disability, as in, I’m on disability. Maybe it’s called something else where you live: SSDI, DLA, PIP, LTD, ODSP, CPPD or FML, because the details regarding what kind of income benefits you may be entitled to are different depending on where you live and what kind of employer coverage you might have, but the stigma around being on benefits, the difficulty in acquiring them, and the struggle to exist on the income they provide, is universal. If you’ve ever needed to make a disability claim, you know that this can be a cringey, stressy, miserable, demoralizing af experience.
And the worst part is, the system seems designed to make us feel this way.
The MS learning curve is steep. Navigating the tremendous financial burden of MS takes a bit of know-how. We need guidance on when it’s time to apply for disability benefits, and how to do it, with a side-order of how to go through the process with your self-worth intact. We are under-qualified to challenge a system that’s motivated to deny us resources.
My early experience with disability insurance
20 years ago, when I was diagnosed with MS, I was working in finance using my bilingual skills to get paid more than I was otherwise worth, in an industry I had no interest in beyond hooking up with Soul Patch (it was a different time), the occasional ride in a private plane (okay, it was one time) and recklessly spending my paycheque on handbags and vodka lemonades, while I used what little free time I had to pursue my actual dream of becoming an opera singer. My stint in finance was a place-holder to satisfy my shoe habit while I figured out my real life.
As soon as I was diagnosed, I had an idea of the kinds of things MS might take from me. Physical things. My vision, my ability to walk, whatevs. But when my neurologist told me to never quit my job, the wind was sucked out of me as all the possible futures I’d imagined for myself felt threatened. He knew what I was still too naive to realize: that I had a job with great benefits, that MS is expensive, and that my now pre-existing condition might make it difficult for me to find employment or get insurance elsewhere.
I felt stuck at a job I was grateful for but couldn’t move on from, because I was dependent on the medication that cost tens of thousands a year, not to mention the disability benefits; a safety net that felt like a crappy consolation prize for a future without a career.
Of course, what I also didn’t know was how difficult and demoralizing it would be to cash in on those benefits and how soon I would need them.
Sidebar: can we stop calling the fulfillment of a mutually agreed upon contract benefits, like it’s Clinique Bonus time? How about “the least we can do considering the shitty situation you find yourself in”
Enter disabling symptoms
Vision loss, fatigue, and frequent relapses meant I almost immediately needed accommodations to continue working. Oh, I had plenty of other symptoms that made office life hard. Bowel and bladder issues and problems with mobility that made it look like I was stealing sips from the bottle of Bailey’s that Kate kept in her desk drawer (we all knew, Kate), not to mention the all consuming stress and anxiety that came with a life-changing diagnosis.
I was quickly introduced to the world of disability benefits, and I knew how lucky I was to have them. It was only a year or so earlier that I’d scoffed at coverage. My monthly birth control (the only drug I thought I’d ever need) cost less than the potential insurance; so naturally, I declined to pay into a plan that would cut into my party fund. The only reason I had coverage at the time of my diagnosis, was because the company had made it mandatory just months before.
Social stigma of disability benefits
For a few years, I worked reduced hours with modified responsibilities. I wasn’t taking home as much money as I had before my dx, but my part-time paycheque was supplemented by my disability insurance. At the time, my symptoms were invisible; and I’m pretty sure more than one person thought I was living the dream, rolling into work on days when I felt like it, making my own hours, and doing what I could.
The first time my benefits, and therefore my livelihood, were threatened, I was on my way to the airport for my bachelorette party in NYC. I checked my voicemail only to hear a message that said my coverage was being canceled. I was panicked and terrified. My weekend was ruined, of course. I was freaking out about my whole future being ruined.
At this point your outrage might be more directed at me than at my insurance claims officer. I mean, how could I have been jetting off to NYC for a girls’ weekend when I was receiving disability benefits, and only working 20 hours a week. I should have been sick in bed, living my sick and sad life. Did I mention that I’d gotten engaged in Paris the year before?
The rule is that anyone who needs help must be helpless, dependent, pitiful. Poor.
I felt this vibe from my co-workers. Not all of them, but it only takes one or two raised eyebrows and a snide comment to poison your psyche and make you come undone. I was defensive. I felt I had to justify everything to everyone, explaining that I wanted to travel while I still could. I shared excruciating details of how MS impacted me in an effort to have my illness taken seriously, as if explaining invisible symptoms ever helped a disbelieving doubter understand anything. My justifications only made me doubt myself.
What I didn’t realize at the time was that, disabled or not, it’s actually nobody’s business how anyone spends the hours when they’re not at work.
One month before my wedding, my employer decided my needs could no longer be accommodated and at 27 years old, I was medically retired. This isn’t an essay about the grief of not working. I’ll save that identity crisis for another day.
When people would ask, “So, what do you do?” I could never bring myself to say the basic truth that, well, I paid into a disability insurance plan, and then I acquired a disability and made a claim. Of course, the short answer is actually none of your fucking business, but that’s an unreasonable amount of hostility to bring to a cocktail party. I choked on saying I’m on disability because I felt the interpretation would be, oh you’re one of those people. Lazy, living off the system. A loser. Ironically, my shady and evasive answers probably fed my own raging internalized ableism. The truth is, it takes a tremendous amount of energy to assert your worth to some rando who almost certainly isn’t going to get it anyway.
When people knew I wasn’t working, I’d often be asked what I do all day; a question I still bristle at. I assume this Q is more along the lines of what the hell do you do all day than a genuine interest in my routine; an invitation to defend how I spend my time while the rest of the world is engaged in the morality of work.
People on disability are expected to exist without really living. We’re conditioned to feel shame for being a drain on society and thankful for whatever crumbs the system throws us. We feel guilty for feeling happy or experiencing anything remotely positive. Disabled or not, we wear being busy like a badge of honour; because culturally, we live in a world that doesn’t even allow us to rest, let alone do anything pleasurable until we’ve earned it.
The demoralizing disability benefits process
Every time one of those big brown claims envelopes would arrive at my door I’d feel a pit in my stomach. The need to assert my deficiencies, over and over again, to strangers who didn’t understand my disease and were trained to doubt me, felt like a situation designed to break me. Aside from the fact that a liveable income should be a human right, it costs hella money to live with a disability. Par exemple, it costs me more than $3 every time I pee, and that’s not just because of how much champagne I drink. Medications, medical supplies, mobility aids, physiotherapy–M$ is bougie. Having access to any of these resources threatened on a routine basis is traumatizing. But even if MS wasn’t so costly, we shouldn’t have to merit our benefits by being broke. Whether by taxes or policies, insurance is something you paid into.
Even when benefits are approved, people with MS never feel safe that they’ll be able to keep them. There’s a constant fear of reassessment. The stress of the claims process is exacerbated by a system that lowkey treats you like a criminal. Like, literally, some of you will have to go to court over this. And stigma makes the process so lonely. Because who can you even talk to? Who will understand without judging?
Worse still is the privilege that exists within the marginalization of disability. I know I have a lot of disability P. My story is far from a worst case scenario. The stigma and difficulty around accessing disability benefits is exacerbated the more marginalized identities you intersect with.
I can’t undo our misguided cultural values with a blog post. But I can say that I see you. You’re not alone. You don’t suck at life. You got a raw deal and you don’t deserve an obstructive, uncaring, bureaucracy on top of it. And maybe I can give you a few tips about how to navigate the system with a little more chill.
Tips for navigating the stressful world of MS disability benefits
Invisible symptoms like fatigue and pain are especially hard to prove. Keep daily notes and record every symptom and what you had to sacrifice because of it. Overload your claims officer with honest and accurate intel. Many of us try not to dwell on the downside of this disease. This is not the time to grin and bear it.
I found documenting my deficiencies to be unsettling. Seeing it all laid out can create anxiety. Keep a gratitude journal on the side for your own personal sanity and to help you maintain perspective. There are lots of apps that can help with symptom tracking.
Communicate with your doctor
Sadly, sometimes stigma and condescension can come from your doctor. Make sure you have a physician who understands and supports you. Ask for your medical records. You need to make sure all your symptoms are documented.
Get professional help
Do your research and consider hiring a lawyer experienced in disability claims. It can feel expensive and intimidating; but it can be worth it to have someone who understands the system and will go to bat for you. There are other professionals who can intercede on your behalf like social workers, and non-profit organizations. Reach out to your MS clinic for resources.
Get your shit together
Cross your t’s and dot your i’s. Don’t miss deadlines. I know you don’t wanna talk to the insurance company (pretty sure their own mothers don’t want to either), but answer the phone. Keep your paperwork all in one place. Request copies of your consultation reports and medical records in advance so that you’re not dependent on your doctor’s busy assistant when the insurer is threatening to cut off your benefits.
Don’t give up
The system feels designed to make you give up. Don’t. If you are rejected, get legal advice and appeal.
Get ready to lay yourself bare; to tell cold and uncaring strangers about your bowel incontinence or cognitive dysfunction. Be prepared for the humiliation of having to work hard to prove what you are incapable of, while processing the grief of not working, and the utter stupendousness that anyone would think you’d actually choose this path.
While you do have to spill to your insurance company, you don’t owe anyone at work or in your personal life an explanation. Constantly defending yourself can undermine your confidence. You don’t need to apologize for enjoying your life. Disability insurance isn’t charity, even if we are expected to receive it as such.
I don’t know what programs exist in other countries, but if you’re a Canadian with MS, you need to know about the RDSP. You can contribute to this plan even if you’re working, and you can triple your investment every year. Apply for the disability tax credit, again, even if you’re working. Start googling what’s available in your hood or talk to a tax specialist.
Never say never
I no longer receive government benefits. Not because my MS got better, but because modern technology and opportunities that didn’t exist all those years ago have enabled me to claw my way back into the workforce. I don’t work in finance or classical music, but MS can make us good at reinvention. I don’t know how long I’ll be able to keep working, but the Covid crisis has changed our understanding of workplace accommodations. I’m hopeful that the lessons we’ve learned might enable others with disabilities to find or maintain meaningful work. Our lives should not be valued by our ability to bring home the bacon; but there are many valid, healthy reasons why we might want to work and why work can be good for us.
So much of crushing stigma is about refusing to accept someone else’s definition of who they think you are. Whether you’re working a lot, a little, or not at all, having MS is also your job. You deserve the fullest life you can imagine for yourself. Unapologetically.