How Disability Benefits Can Make MS Suck Even More

A judge sits behind a gavel, reviewing paperwork.
It’s about to get judgey in here.

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.

Literally rather do my own root canal than fill out this paperwork ever again.

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.

Outrageous, right?

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. 

Medical Retirement

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

Keep Notes

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. 

Steel Yourself

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. 

Don’t apologize

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.  

Save

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.

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20 thoughts on “How Disability Benefits Can Make MS Suck Even More”

  1. When I applied (begged) for SSDI, I had no job, no dr and was afraid to ask. Having been told that the “ask” was an impossible task that required many asks and lawyers. I threw myself on the mercy of the last kind Neuro that I saw. Since it had been years since I last saw her, she did a quick tap and look test and agreed that I needed it. Then she kindly made the visit a “recheck.” Lower fee, because we had driven hours to see her. Then I waited for the SSDI to notice my “ask.” While I waited, I consulted someone with MS that I knew via FB about the “prove MS” test. She said to go in with at least one cane and not show how strong I was. When I finally proved worthy to see one of their doctors. He heard that I could no longer do recreational things and had recently gotten lost driving in my own neighborhood. Then he helped me off the exam table since I couldn’t move. I was approved without lawyers. Then came the “wait.” It took over a year to be able to see a neuro. I felt like a highwire act with no net. Now, three neuros later, I have 3 mobility aids and a DMD (better late than never?

  2. I have been on CPPD since 2008. It was a fight all the way down to the deadline. I was in rehab and in a wheelchair. I applied and it took until the day before my EI sick benefits ran out to get an answer. I was consumed with worry. We had children, a mortgage and could not live on just the one salary. I was afraid we would lose our home. I got a phone call at 8am to tell me the news of my acceptance. I cried the whole day. I still dread the paperwork required to keep this benefit. I had a friend whose husband was in ICU awaiting a double lung/ heart transplant. They also went through this process. He was denied. She had a theory that CPPD has three columns for those who apply… 1) approval; 2) no approval, but force them to go to a tribunal and then approve them; and 3) outright denial of benefits. All this just to keep life interesting. I have four years to go before I hit 65 and won’t have to deal with this anymore. It’s exhausting, demoralizing, expensive, humiliating, and I might add immoral. As if having MS isn’t bad enough, they feel the need to punish you for daring to access the pittance you might qualify for, which absolutely no one can live on.

  3. Wonderful and so very true. It really is disgusting. We have enough of a battle without the difficulty of getting part of our own money back. I remember going through this, begrudgingly. The social worker at my MS clinic was way familiar with the process and told me to drag it out and be as detailed as possible. I sent it to her to proofread. Was lucky enough to get as approved on the first try. I still have people that think I’m lucky to not be working. I tell them I’ll switch whenever they want. Nobody’s taken me up on that offer.

  4. Victoria Cunningham

    Hi Ardra,
    Once again you are spot on with what you write about. Being on disability is so hard, mentally and financially. I’m starting a new DMD soon and spent all morning yesterday trying to get approved for copay assistance from the drug company who is charging ridiculous prices for their medications. They finally agreed I was worthy of their assistance so I will not have to pay $50.00 a month from my meager disability check for hopefully a medication that will help keep my MS at bay. Its so difficult to take these meds not knowing if they will actually work for you. I am grateful for every little bit of help that I get. But it still never really makes you feel better about having this horrible forever disease. I have tried so many different medications for my MS and each one is a crapshoot. Covid vaccine fears, seems to have less side effects than most of the meds I have put in my body over these last 23 years.
    So I keep trying to get better anyways I can think of and then when the next thing I try disappoints me I keep looking for the next thing that I am sure will help me. It’s a difficult and depressing cycle. But as warriors we are not allowed to throw in the towel. No keep going, keepntrying as hard as you can so nobody will accuse you of being weak and not working hard enough to get better! Spend one day in my life and you will see how difficult everything is. Just because you can move around so easily you will be shocked to see what I have to do just to get through one day. I just keep figuring things out as I go. I have no choice and I feel do bad that people with MS have to fight so hard for so little. Sorry I wrote on so long but I guess your article hit a nerve with me. Love and peace to all warriors. Live the best life you can and don’t apologize for what you have to do to get through a day. ❤💪💞

  5. I am at the point where I will be trying to apply for disability and after reading the above stories I can say that I’m tired and anxious already. To the point where I’m thinking why bother? Why does it have to be so difficult. Am I sure I’m disabled? All these trials and tribulations have me doubting my status. Can I pull off another year of work, as physical as it is, just to avoid going thru the judgements and skepticism. Thank you Ardra for this enlightening post…guess I should just pull on my big girl boots and march straight in. Wish me luck!

    1. Go with your gut and don’t let other people’s doubts creep into your psyche. Non-disabled people don’t regularly struggle to decide if they’re abled or not. Our culture encourages ableism and internalized-ableism, because to do otherwise would force society to re-examine capitalism. Fight for your needs, you can do this!

  6. Gayle Garside

    I lost my disability fight years ago. Working full time with two young children at home and a disbelieving husband and manager at work I hired a lawyer to help assist my fight with my old company. I basically lost as didn’t understand the high cost of a disability. In the end my husband left and he lost his job so couldn’t even receive his benefits anymore. So looking back yes I wouldn’t care how many questions my old LTD insurance hounded me and my ex said how lazy I was and my so called friends gave me the look of laziness when I knew I was doing everything right for my two daughters.

    1. Gayle, me too. I’ve tried to reinvent myself but it hasn’t led to lengthy employment. It’s demoralizing. And isolating. But You’re not alone. Thanks Ardra, you explained the complexity of issues and emotions well. I found Doctors and physical therapists don’t fully appreciate what poor endurance means to someone who “looks so good” until your Gumby legs give and you fall in front of them. What my LTD did caused me A PTSD type disorder. I think LTD companies should be required to publicly list the number of Pwms they’ve terminated/ denied. And I think the MS society is in a good position to survey its members about LTD denial and whether they’ve entered the workforce again or live poorly. It’s an ignored issue. No one wants to believe it.

  7. You are brilliant Ardra!!! All of what I just read is some of what I am going through atm. Don’t get me started on when I was called a liability from the human resource manager of my previous employer. I have been unemployed due to COVID for a year now. The job market sucks balls for someone with MS or anyone with a disability for that matter. I have applied for many jobs and no one wants to hire someone that can’t work “on the premises”. The whole thing makes me sick. Thank you so much for being you. You deserve to be heard. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

    1. I’ve also been called a liability by my HR boss lady and was then removed from my job “for health and safety reasons”. This kind of attitude is outrageous and I am so freaking sorry to hear you have had a similar experience. ♥️

  8. I am very fortunate to have been able to work until age 58 with a company that has good benefits. My intention was to retire early with full pension at 62 but my MS went off the rails last Fall and I can’t stand or sit on my own and have terrible vertigo. So many forms to fill out! Your advice is spot-on Ardra – you have to keep good notes and get the tedious paperwork in on time. I feel like paperwork is my new job. If I didn’t have a husband who has to get up for work every day I would probably prefer to stay in bed most days as being up and about is exhausting. I feel like it’s some weird invisible test I’m in and I keep hoping it’s a bad dream and I will wake up “normal” one day. I even cut my long hair off to one inch length because it’s hard to deal with hair when you feel like you are drunk and hung over at the same time every day!

  9. I can relate to so much of this, and as usual, you hit the nail on the head!

    I applied for the Disability Tax Credit last year and was rejected at first. Thankfully, my GP is awesome, and let her rage fly at the Ministry for rejecting my application- a decision they quickly overturned after receiving her strongly worded letter.

    As far as I’m concerned, I am going to take advantage of every “benefit” possible because this shit ain’t easy, and I’m tired of being stoic to make other people feel better.

  10. Ardra, you’ve nailed it! The stigma is real, and true even with family and friends who have seen me struggle! My story is similar to what you and others have stated.
    Thank you for being bold and a strong voice for us trippers!

  11. All. Of. This! All of it!!! To just give a basic lifesaving tip here (find any extra $. Sell your Toe if you have to. But get a disability Advocate and have them hire a disability lawyer and doctor to fill out those wretched soul crushing forms. Let the professionals battle for you. Gawd knows with MS we are always f’in battling. With this one though hire a legal team with a doctor who understands how to fill these forms out exactly! And if you are Canadian like Ardra says get on that CDPP ASAP! 🧠🗣 We all understand you here.

  12. Thank you for writing this. I applied for CPP disability over a year ago. The process was so stressful and demoralizing. I was initially denied my claim and one of the reasons given was that I was seeing a councillor and I “may see improvement” in my condition; I applied due to chronic fatigue… I was denied because I was actively seeking treatment to help cope with no longer being able to work and the very real possibly of going bankrupt. Fast forward a full 12 months later (a full year in which I wasn’t able to work and I had no form of income) and I was finally approved. Myself and my husband now get to struggle trying to raise our two children while I receive $700 a month. I had a good job but unfortunately I was not permanent so I was not entitled to pay for long term disability benefits.

  13. Thank you for sharing this with me. Though a different disability, I’m also dealing with an ‘invisible’ issue and still hoping I’ll be able to return to work, whether where I was working, or someplace else, I’m not sure. Good advice here as I’m still dealing with insurance. I like the reminder that it’s not charity, it’s something I’ve been paying into for ages. Definitely felt like the folks at the insurance company default to being sure everyone is lying and trying to scam the system – they definitely make things worse and cause trauma!

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