A Note to Those Who Think Receiving Disability Benefits Means I Have it Easy

Five years. That’s how long it took for me to start receiving disability benefits after I first applied. According to the Social Security Administration (SSA), it should take three to five months to process an application. But a decision doesn’t guarantee you will receive assistance, and you have to keep reapplying until you do.

Sure, receiving any amount of income is nice, especially if you have an invisible disability and illness that makes it very challenging to work full-time. The process of applying for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) shouldn’t be as difficult as it was for me. There were so many roadblocks that I had to go through to get the help I needed. What’s more, receiving these benefits didn’t automatically make my life easier, either. Here’s a look at why.

1. Receiving disability benefits can take longer than you think

When I was diagnosed with polyarticular juvenile idiopathic arthritis at 18, I had no clue how it would impact my health, let alone ability to work. I was about to attend college, and I would later intern and start working full-time in a corporate office job. For the first few years after my diagnosis, I was doing okay, but I struggled with a limited range of motion in my right wrist, certain parts of both hands, and my right elbow.

Losing any sort of mobility in your upper extremities — such as your hands, wrists, elbows, and shoulders — is extremely disabling. We use these parts of our bodies for the simplest of tasks that we don’t think twice about — until you can’t do them with ease anymore. My parents and I were concerned that things were going to keep getting worse.

The first time my parents applied on my behalf in 2007 — because I was a minor — I was denied because I wasn’t seen as “disabled enough.” Apparently, the proof sent in by my medical doctors didn’t qualify me. But a rejection letter took months to arrive. It took until 2008 to get the official denial decision, and by then I was four years into my diagnosis.

In the years after I graduated, my health continued to have its up and downs until I hit a rough patch and working a typical 9-to-5 job became unbearable. As I was still a minor and under my parent’s insurance until I turned 26, they applied on my behalf yet again in 2011 — our second attempt.

As part of the application, you have to list what is hard for you to do. This was the most depressing part of the process, because it forced me to have to acknowledge parts of my disease that I didn’t want to accept, such as not being able to button my sweater or even blow dry my hair because the elbow damage on my right side made it too painful.

Months and more months passed with no word. I kept working full-time, to the point of burnout. Then about a year after I applied, I randomly received a large sum deposited into my bank account. At first I had no idea what it was, but it turned out to be backdated payment. A few weeks later, a notification of approval was sent to my home.

It couldn’t have come soon enough: Not too long after, my body turned on me again, with a massive flare that left me bedridden for weeks and took a full six months to recover from.

2. Dealing with medical insurance has been another unexpected roadblock

Filling out an application and having it approved in a timely manner would be the optimal way to go about this grueling and soul-stripping process. This process is like a huge fishing expedition into your unpleasant past. You have to gather all your medical records that detail your health journey from pre-diagnosis to after, any medical report summaries from every doctor you’ve ever seen, and anything else to “build your case” — as if having a disabling medical condition means that you are guilty of something.

Newsflash: No one is at fault for getting sick, being in pain, and being unable to work like a “normal” person. I’ve learned to accept that sometimes this just happens and it’s out of our control. We’ve been through enough dealing with our medical conditions; proving over and over again that we’re “really disabled” just adds to the burden and trauma of living with a disabling disease, especially at such a young age.

After you go through the entire process of sending in your life story, you are then told you must wait approximately two years to receive medical insurance. According to the SSA, “everyone eligible for Social Security Disability Insurance (SSDI) benefits is also eligible for Medicare after a 24-month qualifying period.” You might think of Medicare as government-issued insurance for people over age 65, but this kind of insurance can also be issued to people under 65 with disabilities. It includes two parts: hospital coverage and medical insurance.

I recognize and appreciate that any insurance is better than no insurance. But this coverage isn’t always suited to helping people afford all the different aspects of managing a debilitating chronic disease like RA, which often requires seeing many different types of doctors, trial and error to find a medication regimen that works (and keeps working), and may benefit from different complementary therapies and lifestyle changes. When my insurance doesn’t cover certain types of doctors or treatments, I have to pay out of pocket and incur medical debt.

3. You start to give up hope and worry about the future

A lot of bad things can and did happen over the five years it took to start receiving benefits. Even when I was able to work full-time, it wasn’t easy. I had to wake up earlier than normal just to be able to function because the stiffness in my joints was so bad first thing in the morning.

There were times when I got to work in the morning and had to rest for a few moments in my car before heading in because my fatigue was so bad.

But then there were days and weeks when I felt amazing and had no issues — that’s how it is sometimes with a disease like RA, which ebbs and flows, flares and subsides. These are the types of things I struggled to explain to SSA when applying and reapplying for disability benefits.

Those years of not receiving any assistance had to be the scariest ones of my life. I was approaching my mid-20s and had to depend on family members for literally everything. I began to have serious worries about my future. Would I need to stay on disability forever? How would I explain my medical and financial situation to prospective love interests? And if I ever got married, the amount of disability I receive could be reduced or stopped altogether. This is because a portion of a spouse’s income and assets counts as yours. Talk about soul-stripping.

Worst of all, though, being denied disability benefits when my doctors, family members, and I knew all too well the severity of what I was dealing with made me lose hope. And losing hope is not what you need when you’re diagnosed in high school with a progressive form of inflammatory arthritis that you’ll have for the rest of your life.

4. People question how you spend your money

Receiving disability benefits is far from winning the lottery. I get about $1,250 in my bank account every month, which is well below the poverty line. It’s not enough money to buy a home, a car, or anything other big splurges that people my age buy so freely. Yet, when people see you dressed well or going on vacation, they think you have all the money in the world.

The truth is people who receive disability benefits know what it’s like to struggle and survive through that struggle. We know what it’s like to not be able to do what we want. The majority of the money goes to basic necessities such as food and bills. There isn’t enough wiggle room for extras. This has forced the word “no” into my vocabulary — a big adjustment, as I have always considered myself to be a “yes” person. Now I have to say no, out of necessity, to certain invitations or opportunities that I simply can’t afford at that moment. Pain and hardship teach you how to budget, save, and treat yourself to something once in a while.

What has helped me be able to do certain things is working part-time as a freelance writer — which is allowed with disability benefits — and in recent years I have been feeling well enough to able to do that. Another thing that has helped is having supportive family members who help me out financially from time to time, offering to help pay for supplements, specialty groceries, or doctor’s appointments. Some people in my situation don’t have that, though. They must rely solely on themselves with no outside help.

5. The ‘proving your disability’ part never stops

Even after you receive disability benefits, the “proving” part never stops. I have found myself constantly needing to provide explanations and justifications to everyone from my local SSA office to friends and others in my life to complete strangers.

In the beginning, everyone wanted to know “why,” as in, “why did you go on disability?” I heard this especially from older adults who seemingly wanted me to have “a chance at life” rather than “succumb” to receiving disability. It’s not an easy decision to make, and sometimes you can feel like you gave up or are a failure in society’s eyes.

Some friends would ask questions out of general concern, curiosity, and wanting to learn about the disability benefit process. Others would listen, but ultimately impart judgment and negativity — focusing on how I could possibly afford certain things or question whether I was really in too much pain to work, since I could work from home part-time. If I had good days, they didn’t understand that didn’t mean I was okay to go back to work full-time.

Then there is a medical review that SSA requires, where you need to send in proof of your disability and be examined by a doctor they send you to (even if you already have your own specialists). My review is every three years. The process used to make me nervous, but not as much anymore.

For one, the irreversible joint damage caused by my arthritis isn’t fixable, and I know now that the medical doctors in charge of disability reviews know this. They understand that I will have improvements, but I’ll always have limitations that are hard to push through. There is no amount of motivation or positivity that can force my right wrist to bend back at a 90-degree angle.

Part of what’s made me less nervous about these reviews is that I have built up knowledge about what to expect. Plus, I have a lot more patience about navigating these roadblocks.

I’ve been receiving disability benefits for more than eight years now and have experienced so many ups and downs along the way. This is another one of the aspects of managing chronic illness that you can’t even fathom when you start having some hand pain as a senior in high school. That turned out to be rheumatoid arthritis, which turned out to completely derail the life I thought I’d have. But you know what? I still get to follow my passion as a writer and health care advocate. I get to use my experiences — good, bad, and ugly — to help others going through similar issues.

And I’ve learned to appreciate and value certain things much differently than I did before I went through all of this. Like the importance of believing someone when they talk about their lived experience. I still remember the feeling when I finally had my hearing with a judge to get my disability benefits approved way back when.

I finally felt seen, heard, and validated. Because she was on my side.

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation. It is comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.