Tell us about your symptoms and treatment experience. Take our survey here.

Applying for Disability Benefits

I've had axial spondyloarthritis and fibromyalgia for about four years now. Well, that's when I was diagnosed. In truth, I've probably had it for closer to a decade. I first experienced symtoms like pain and fatigue in my teens and was diagnosed at 20 years old once my symptoms had worsened significantly. Because of how early on these conditions manifested, I've never really been able to find and maintain a job.

Once I'd come to terms with having AxSpa and fibro, and living with chronic pain and fatigue (I still struggle with it some days but that's okay), I realized I probably won't ever be able to work (as in have a stable job with consistent pay). I've found a lot of freelance work, especially in the arthritis communiy, but it is not enough to live on and depends entirely on my conditions. I am only able to work on low pain days and that is not a reliable source of income. This and the encouragement of my loved ones, made me seriously consider applying for disability benefits.

I was very nervous to apply for disability benefits

I have heard of so many people being denied who have got the same conditions. I've heard of people getting denied multiple times. I'd also heard of people having to hire lawyers and go to tribunals to fight their case. Most of all, I'd heard people say how dehumanizing and upsetting the application process is, where you've got to list how your disability makes you unable to function in society and have your doctor corroborate this in exhaustive detail. This seemed like a daunting ordeal and I was scared of going through it. And so, I put it off indefinitely.

It was confusing and overwhelming

Once I finally mustered up the courage to try and apply online, I found it to be very confusing and overwhelming. I tried a couple of times and even got my sister to try and help me but we couldn't figure it out. This made me really anxious and uncomfortable so I decide to come back to it later. Life got hectic with school and my conditions and I finally decided to give it another go about a year later.

This time around I was determined to do everything I could to send in my application

My condition wasn't getting any better and I needed help. Even if they denied me, at least I'd know I tried. I felt like a burden on my family and not having any money was really hard and made me feel really bad about myself. So, I called the municipal office responsible for applications and asked them to help me. They were very helpful and turns out the application was just worded in a very confusing way.

Once I'd sent in my portion of the application I had to wait for it to be processed. After about a week I was called by an intake case worker from the municipal office who verified information with me over the phone. A couple weeks after that, I was booked for an in-person appointment where the case worker would give me several documents to fill out and have my doctor fill out to complete my application. Overall, this process took a couple of months. It then took about a month and a half to get my doctor to fill out the required forms outlining my disability, its severity, and whether it is temporary or permanent. Once I'd gotten the forms from my doctor, I had to mail all the documents to the head office where they would and I quote "decide if I am disabled."

The entire process of filling in documents was as dehumanizing and upsetting as I heard it would be

Spelling out in explicit details all the ways I struggle every day was very hard. Having my doctor verify the degree to which I struggle was also hard. I felt like my whole life was at the mercy of some random people who would never understand how truly difficult AS and fibro makes my life. But it was all worth it if it meant I could get financial help.

About a month after sending in my application I finally heard back. They said I met their definition of disabled and that once the municipal office determines if I am financially eligible, I can begin receiving benefits. A couple weeks after that I began receiving benefits. I was so surprised. I had heard of how so many people had to apply over and over again before they were approved so I was mentally prepared to be denied; I never thought I would actually get it.

Having consistent financial help has significantly impacted me

I no longer stress about money the same way. I am also able to contribute to rent, which my mom used to pay all by herself before. This made me feel like less of a burden and made me feel more comfortable taking up space. It also significantly reduced my metal stress as I knew that bills would be taken care of no matter what. It also gave me the space to prioritize managing my symotoms instead of pushing through and flaring up just so I could make some money.

While the financial help makes a difference, it is only enough to coast by while living with someone who supports me. I am privileged to live with my mom who takes care of majority of the finacials. However, if I lived alone, the benefits would not be enough to live on, even when supplemented by my freelance income. It is enough for me to manage to live on but I really empathize with all the other disabled folks who don't have additional finacial support.

I am so grateful to be receiving disability benefits. They really help me as a disabled person to focus on managing my conditions and remaining stable.

By providing your email address, you are agreeing to our privacy policy.

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

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America Survey yet?