Skip to Accessibility Tools Skip to Content Skip to Footer

What Being on Disability Means and Does Not Mean

Almost two years ago I announced to my family that I was going to apply for Disability. Although I loved my job, my doctor urged me to take a break. At that point I was barely able to work 15 hours a week and spent all my time either sleeping or catching up on work. I didn’t have enough energy to truly dedicate myself to getting better. A break could give me the ability to get rid of some stress, focus on new treatments and maybe allow my body to heal. While they were supportive, my family had questions and reservations. There is a definite stigma  attached to being on Disability. I didn’t have all the answers. It took a long time to discover what being on Disability means and doesn’t mean. I hope this may help others to understand how Disability can be beneficial.

*Note that for the sake of this article, “Disability” refers to receiving a monetary supplement either through a private insurance carrier (usually provided through your employer) or through Social Security Disability Insurance also known as SSDI. I recognize that there are many people who have disabling conditions but are forced to work for financial reasons or who have not applied for or have been denied their Disability claims.

What Being on Disability Means

Being on Disability means that one or more medical doctors believes that we are incapable of continuing to work at this moment due to a REAL and life-altering medical condition. Whether applying for the Family Medical Leave Act (FMLA), short or long term disability through our employer or seeking SSDI, no claim is approved without a doctor’s recommendation.

Being on Disability means that we are taking control of our illness. We use all our energy just to make it through the work day, which leaves us no time to make significant lifestyle changes in the hopes of getting better. Without the stress of work we can now explore new treatments, go to new specialists and get stronger.

Being on Disability means that we have a new full-time job as a “Professional Patient.” Hours of paperwork, copying, staying on hold with insurance agencies, coordinating benefits, following up with Disability case workers,  dealing with medical appointments (scheduling, preparing and attending), and researching new treatments can be an overwhelming new world that we are thrust into with little knowledge or training.

Disability can strike anyone at any time. The Council for Disability Awareness[1] states that:

  • More than half of disabled Americans are in their working years, from 18-64.
  • One in eight workers will be disabled for five years or more during their working careers.
  • A quarter of all people entering the workforce today will be on SSDI at some point in their careers.
  • Approximately 90% of Disabilities are caused by illnesses rather than accidents. Debilitating illnesses can range from cancer, disorders of the nervous system and sense organs, congenital defects, viruses,  cardiovascular disease, and mental health issues, many of which are invisible illnesses.


What Disability Does NOT Mean

Disability does NOT mean you are required or need to have a handicapped sticker on your car. Those using wheelchairs, canes and prosthetics are not the only ones who can be considered disabled. Invisible Illnesses can be just as painful and debilitating as any physical deformity and can be approved for Disability payments. These can include Lupus, Lyme’s Disease, Crohn’s Disease, Ulcerative Colitis, Migraine Headaches, Arthritis, Fibromyalgia and Mental Illness.

Disability does NOT mean that we all sit at home on the couch eating bon-bons and watching the Real Housewives of whatever. While this may happen from time to time because we are too sick to do anything else, our days are often filled with dealing with our illness and catching up on life that we missed while our illness brought us down for days, weeks or months on end.

Being on Disability is NOT “an excuse.” We would much rather be at the family picnic, at our kids’ sporting event, making money in the workplace, on a date night or just hanging with our friends. Our illness puts limitations on what we can physically handle. Not being able to live the life we once had can be extremely depressing. It breaks our heart to have to say “no.”

Being on Disability does NOT mean we are seeking a free hand out. It is an incredibly long and tedious process to get approved for Social Security Disability. Even with the help of an attorney or advocacy group and our doctor it can take years to receive benefits. The red tape can discourage people from applying for or following through on appeals. A large majority of claimants are denied in the first round. Only a third of applicants were approved in 2013 on their first try2.

Being on Disability income from the government is usually NOT enough to live on.

  • The average monthly benefit in 2013 from the Social Security Administration was $1,235. That equals $14,822 a year. The POVERTY line in America in 2013 was $11,490 for one person. 2
  • 100 million workers are without private Disability income insurance.1 Additional private Disability insurance gives patients monetary benefits above and beyond a SSDI award, which could make the difference between barely making ends meet and living more comfortably.
  • Medical problems contributed to 62% of all personal bankruptcies filed in the U.S. in 2007 and to half of all home foreclosure filings in 2006.1

Being on Disability does NOT mean that we aren’t allowed to have fun. There are days when we feel strong enough to go to a concert or throw a dinner party. We shouldn’t be judged for it or feel guilty about it. We carry a heavy burden every day with our illness. We don’t need to apologize for the good days.

Being on Disability does NOT mean that we won’t ever go back to work. It means that we are currently unable to perform the job we once had. Depending on the degree of our Disability it is possible to learn new skills, find better ways to manage our illness and return to work. The average individual disability claim lasts 31.6 months.1 In 2011, half of those on Disability who went through vocational training entered back into the workforce.2 I personally have transitioned from a career in banking to a home based writing job.

Disability does NOT mean that we are giving up or we’ve failed. We have accepted our illness and its limitations. If we need to take time to heal, we should feel empowered to do it and not feel guilty. The people who judge us don’t have to deal with the constant pain, the sleepless nights and the financial stress of being disabled. It is important for everyone in the workforce to know and understand how a disabling event would effect them financially. To learn more about how to apply or prepare for Disability, the following articles will help you to start the process.

https://migraine.com/blog/disability-income-preparation-guide/

https://migraine.com/migraine-basics/social-security-disability-insurance-benefits/

https://migraine.com/migraine-basics/family-medical-leave-act-migraine/

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Council for Disability Awareness. “Disability Statistics” Available at: http://www.disabilitycanhappen.org/chances_disability/disability_stats.asp. Accessed January 2015.
  2. Official Social Security Website. “Research, Statistics, and Policy Analysis.” Available at: http://www.ssa.gov/policy/docs/statcomps/. Accessed January 2015

Comments

  • maxgordon
    4 years ago

    I have applied for Disability twice and been denied twice. I can’t accept a job with regular hours because of my chronic migraines, so I work from home as a writer/editor. I am unable to do that work (which I do very well and can earn money doing) when I have migraine, or during those hours leading up to and following a migraine. as a result, I work every minute I can when I DON’T have a headache (so rare!) so I can pay the rent and other bills. I don’t dare take a day or even a few hours to just have “fun” (not sure I remember what that is) because I could have migraine for the next few days and miss a deadline…and not get paid. I don’t want to eat bon-bons (and chocolate is a trigger-risk for me anyway); I just want to be able to live in something less than 99% anxiety. I have no savings, no retirement fund, and no assets, and I am going to be 57 in October. Yet I didn’t qualify for Disability because I am “able to perform my daily functions without help.”

  • Ramona
    4 years ago

    I have been on SSDI since 2005. It took me four years and three judges to be approved. My lawyer was amazed because of my medical history – multiple problems. I was finally granted disability because of my bipolar disorder and had to fill out papers every year to prove I was still disabled until I fell and had a serious concussion which knocked me out and took away my short term memory and I had to relearn to spell. I had the help of my psychiatrist and an evaluation center plus my primary care physician. My migraines never were a part of the process since I’ve got multiple other health issues. People act like I committed a crime because I’m on disability because I don’t look sick. They don’t realize the pain I am in just trying to act as if I’m fully functioning. I worked for a hospital and they acted like it was a crime to be sick. Excuse me? A Hospital? Oh yes I worked as a secretary on one of the floors. The nurses were all concerned about me but the floor supervisors and others in charge always gave me problems even when I looked like death warmed over coming in to work and could barely function. I had hit my head so hard one day before work that I literally saw stars, had a massive headache and my husband took me to ER and the doctor there accused me of just trying to get out of work, the heck with the problems I was having at the time. I finally quit when my health took a turn for the worst. They didn’t care.
    We are so discriminated against. Women especially. I actually miss my high stress job and the people. I couldn’t handle it any more because of my inability to remember things. I hate that that fall took away memories. I recognize people’s faces but haven’t got a clue their names. I know words but have no idea how to spell them even incorrectly to get spell check to pop up suggestions.
    I barely make it paycheck to paycheck. That adds more stress to my life. I don’t want sympathy. I want understanding from people. I have days I can barely walk (arthritis & fibromyalgia) and other days I’m fine. My asthma makes it hard to breathe at times, when that happens I have a panic attack, which is not pretty. That stems from anesthetic from my carpal tunnel surgery – finally figured that out with help from my therapist.
    We’re all human. We all have feelings. We didn’t ask for these problems. I’ve had migraines since I was 10 – I turned 60 last September. I take meds daily to try and prevent the migraines, sometimes it works sometimes it doesn’t. There are a lot of meds I can’t take because of my other medical conditions so treatment options are limited.
    Another being on disability and having Medicare you’re limited in your treatment options because Medicare doesn’t pay for a lot of meds or treatments. That was another problem. You pay $105+ a month for medicare plus you have a monthly Medicare Part D premium you pay for. Still no guarantees for getting proper meds for your migraines or other medical conditions. It’s a sad state of affairs.

  • Erin Kenny
    4 years ago

    Thank you for writing this.

    I have been on disability (ODSP – Ontario Disability) for 17 years now for migraines and my husband is also disabled – we barely survive financially. I would desperately *love* to be healthy enough to return to work.

    I’m not lazy – I’m in pain most of each day. It has been over a decade since I had a pain free day. The pain is bad enough that I started out taking sick days until my employer threatened to fire me for inconsistent attendance. Then they were only a few days a week. If I could find a treatment that worked I would do anything!

  • Leslie
    4 years ago

    Thank you so much for writing this!!!! After almost 3 years of constant pain and having to quit my job, I applied for SSDI and was finally approved…which I was surprised at! But I have felt very guilty about doing it until now.

    After many doctors, medications, tests and treatments, I finally have a diagnosis, NPDH, New Persistent Daily Headache. It is a newly added headache diagnosis and it is fairly rare. It mimics a migraine in symptoms however the pain is more constant and last longer, which mine has and no medications have been found to help it. They don’t know how long I could have this but it could be years and there is no way I can work like this. So for me to finally ‘give in’ to the pain and apply for help was a hard decision. I felt like I was failing or letting the pain get the best of me. However after reading your article I’m looking at this differently 🙂

    I worked all of those years but now I can’t. So I’m being helped out a bit while I’m taking time to take care of myself. I am getting ready to go to Cleveland Clinic for a 21 Day Program for NPDH. It’s a combination of PT, individual and group therapy to help teach me to manage my pain instead of the pain managing me!! This is what I need, the best treatment option I’ve had that could help me.

    I’m taking care of me now and I don’t feel guilty for it!!!
    Thank you!!!!!

  • Katie M. Golden moderator author
    4 years ago

    @Leslie,
    I’m glad this article resonated with you. None of us want to be in this position and we shouldn’t feel guilty for it!

    I’ve heard great things about the program at the Cleveland Clinic. Here’s a forum thread about it:
    http://migraine.com/topic/cleveland-clinic-headache-program/

    Please let us know how it goes!
    -Katie

  • Koch
    4 years ago

    Thank you for this post. I agree that managing a disability is a full time job in and of itself. I don’t sit around eating bonbons all day, either. I have chronic pain due to back injuries/surgeries and migraines that last a good three days on average. I try to squeeze as much out of each day that I can, but there’s only a small window before I’m physically and mentally wiped out.

    I’m “lucky” enough that I was able to take a state pension and not have to deal with SSDI. While they were really great to deal with, the city’s worker’s comp carrier was a nightmare. They were downright cruel and vindictive at times—and I’m not the only one with stories. I had to get a lawyer if I wanted any kind of successful outcome and I’m wondering if that is a possibility with SSDI or other forms of disability. Maybe this is common knowledge here, but what they normally do is take a percentage of any settlement instead of charging by the hour. (My poor lawyer has been waiting around for a good 10-15 years for a settlement, thanks to 2008, though!) I do know that most will try to deny any and all claims, so you do have to appeal and fight. Really great when you’re not feeling up to a fight, huh? But I guess that’s what they’re counting on.

  • Sandy
    4 years ago

    Thank. You. So empowering for me im sure for others as I apply for disability and encounter some of these problems.

  • Nancy Harris Bonk moderator
    4 years ago

    This is a wonderful piece. Thank you for sharing your insight with us – it’s validating for those of us on SSDI.

  • Luna
    4 years ago

    The average monthly (disability) benefit in 2013 from the Social Security Administration was $1,235. That equals $14,822 a year. The POVERTY line in America in 2013 was $11,490 for one person.

    Consider this:
    That disability benefit is equal to or more than a good percent of social security recipients monthly benefit. Especially if one has to go on at age 62. Then they take out around $105.00 per month for the medicare part A premium.

  • Poll