What It Means to Fight for a Label You Don't Even Want

I’m a young adult, I look healthy, but I am disabled. I no longer wish to be ashamed of myself for that. My wish is for Social Security Disability Insurance (SSDI) to acknowledge that I am, in fact, disabled.

I became disabled my junior year of college, shortly after being diagnosed with moderate to severe ulcerative colitis in 2008. By 2010, I applied for disability twice by 2010 and was denied both times. I reapplied in 2016, several years after the onset of my chronic pain, and was denied a monthly benefit. The hearing finally took place in 2019 after I hired a lawyer and they agreed that I had a case. I was granted back pay for the months I didn’t work the previous three years, but was denied an ongoing monthly benefit because it looked like my health would improve. I also made about $500 too much money to qualify — I made a whopping $17,000 the previous year. I work part-time, but I was working as much as I could to pay rent and other bills. I was barely scraping by.

Six weeks after that hearing, I had a life-threatening blood clot. It was called a saddle pulmonary embolism, which compromised heart function. I spent two nights in the ICU. I would hardly call that improved health. My lawyer then suggested we appeal, and I was back on the books for another hellacious process of denial.

Social Security (SSDI) determines disability through a rigorous process. They have a judge and an independent medical reviewer, who review your medical records to determine if you are totally and permanently disabled. Disabled essentially translates to “totally unable to work.” They want to know the specifics of what you can and cannot do. They ask your doctor how much you can lift, how far you can walk, and how long you can stand. They also want to know how long you can sit or if you can squat, among other limitations. They want the exact specifics of how your disability affects your ability to work. They measure your functionality and want to know precisely how your condition(s) interfere with your everyday life. They even have a family member, friend, or significant other fill out a questionnaire about their perception of your health and functionality. The family members are not allowed to fill it out with help from the applicant.

I found out the hard way that if you don’t have a lawyer, you don’t have a chance. When I didn’t have a lawyer, I was denied immediately. When I did have a lawyer, I actually got my day in court. The great thing about hiring a lawyer is that they won’t take your case on unless they think it has merit. During the hearing, the lawyer acts as your defendant, everyone else in attendance is trying to prove you’re lying or exaggerating your condition, at the very least. The lawyer takes a large chunk of your backpay, but only if you win. If you aren’t awarded any money, they don’t get paid.

Not only is it hard to prove disability, but it’s also often hard to find a doctor who is willing to support you in pursuing disability. Most doctors believe that SSDI encourages disability. Arguably, it does—but that doesn’t mean there aren’t actual disabled people out there! This means they won’t support your endeavor in getting approved by SSDI because they don’t want to encourage you to be disabled. They want you to be a productive member of society who does everything you can for your health. It’s a shame those doctors can’t see that many of us are falling into both categories. We may be disabled and thriving at the same time. But our 100% effort can look more like your 75% effort. It doesn’t mean we’re not trying. It takes a lot out of a disabled person to give it our all. We don’t deserve to be punished for working as hard as we can while still actively seeking approval for Disability. Unfortunately, since SSDI does have an earnings cap, it can be easy to agree with doctors that SSDI encourages disability.

I do not want to be disabled. After nearly 20 years of health and typical development, I was suddenly thrust into the world of disability. I felt stigmatized, I felt like a failure, I felt less than, I felt like I had let everybody down. I felt like wasted potential. I was a good student in high school, graduated with honors, and had to drop out of college before I even had my generals finished. It felt like such a failure. Disability was the last thing I wanted to live with the rest of my life.

So now, after over 12 years, why am I fighting so hard for the label I spent so much time running away from? Because the truth is, I am disabled. I can’t work 40 hours a week without risking pain and other symptomatic flare-ups. I can’t walk more than one mile, I can’t stand for more than 30 minutes, I can’t lift more 30 thirty pounds. Sometimes I can barely hold myself up straight.

I don’t wish to spend the rest of my life dependent on the government. I grew up with two brothers getting Social Security Benefits. We always made sure our income was low enough to qualify for medical assistance and food stamps. I was always looking forward to a day when I could support myself, but that day is still yet to come. In the meantime, I need some help getting back on my feet. I need SSDI to recognize that I’m doing everything I can to better my situation. I work part -time, but I call in sick due to flare-ups and would no longer describe myself as dependable. Furthermore, working part-time is not enough to support myself on a yearly basis. Without the help of my fiancé and future-mother-in-law, I would literally be homeless.

I want for SSDI to recognize that my body has endured enough. It fights hard every day to keep me alive, to work with the medication I take that keeps my body from attacking itself. I’m certified disabled within my own state and have homecare workers, but SSDI is yet to certify me. It was designed as a safety net for people in my position. I’m fighting for a label I don’t even want. Yet I refuse to stop fighting.