A disability application being stamped and denied.

Applying for Disability: Interview With Patient Leader Diana Castaldini

Last updated: July 2022

Our AS.net community has shared varying experiences regarding disability applications. Some people were approved right away, others appealed and eventually were approved, and some have been waiting for years to get their much needed approvals with no luck.

We are focusing several upcoming articles on varying disability application experiences. In the interview below, I spoke with Patient Leader Diana Castaldini, who has been on disability benefits for some time now, and she shares the good, the bad, and the complicated below.

AS.net: When did you know it was time to apply for disability?

Diana: In 2015, I had been working as a full-time freelance writer and editor for about two years. While I enjoyed the work tremendously and found it to be rewarding, my daily symptoms of fatigue, stiffness, and pain worsened the more I worked. It would take several hours to feel functional and alert in the mornings due to exhaustion and brain fog, and then I would pay at the end of each day with increased pain from sitting at my desk to conduct interviews and write. I also had unpredictable flares that made it extremely difficult to meet deadlines.

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I realized I had no choice when I could no longer work five days a week, eight hours a day. Many people don’t know this but that’s actually the criteria for being approved for disability—your condition must prevent you from being able to show up every day in a full-time capacity. Given that my symptoms flare unpredictably, they currently interfere with working 40 hours a week. That’s not to say one day they won’t—but at least for now, they do.

Another thing most people don’t know is that the average SSDI benefit is not anywhere near a livable wage; it’s around $1,300 per month. At best, it provides the equivalent of part-time wages. Keeping that in mind, no person applying should feel guilty or ashamed for needing this little bit of government aid. Most of us have to figure out other ways to cut expenses or bring in income in order to survive.

How long did the process take and/or how long did it take you to apply?

From application date to approval date, it was a solid three years, with a lot of ups and downs in between. I pushed myself to work enough part-time jobs to stay afloat but not so much that SSA would deem me able to work full-time. Most lawyers will tell you that engaging in gainful employment while you are applying will harm your case because that proves that you can indeed maintain a full-time job. Most applicants find themselves in a dire position, needing to work in order to survive, but physically unable to sustain a full-time job. And if they force themselves to work in order to make ends meet, it hurts their chances of receiving the disability benefits they desperately need.

This is how people lose their homes. It is a travesty as well as a failure on the part of the U.S. government, in my opinion. I am so grateful that I had my family to fall back on. But I barely got by and often had to let bills go unpaid during the waiting period.

The timeline went as follows:

  • I first applied in 2015 and was denied within a couple of months. Having no prior knowledge of the process, I was devastated to be denied and, frankly, was offended because I had included all of my medical records and truthfully described my physical challenges. I had no idea that this was par for the course and the Social Security Administration (SSA) denies the majority of applicants upon their first application.
  • Once I looked into it further, I saw that most applicants end up having to appeal the first decision and work with a lawyer to get approved. This marked the beginning of my education on how terribly this country and our government treat the disabled.
  • In early 2018, after three years of endless waiting and struggle, I received a court date for my hearing. I appeared in front of a judge with my lawyer in June 2018 and I got my approval letter in August 2018. I began receiving benefits in September.

How did you go about finding a good lawyer?

My first step was a Google search and cold-calling lawyers in my area that handle SSDI cases. I was given the run around by some offices, and one random legal assistant told me I was too young to win my case. I was fully approved at the hearing stage so that was a complete falsehood. My first tip for anyone going through this process would be: If you are legitimately unable to work full-time because of your condition, don’t listen to anyone who says you can’t win.

You’re going to hear all sorts of things as you proceed, and just because someone says something doesn’t make it true. They could be misinformed, uneducated, confused, or just having a bad day. It can take time to get accurate information. Trust yourself and the factors that motivated you to apply, and fight for what you need and deserve.

I had to switch lawyers midway through the process because the first one I hired was not helpful enough. Their office took too long to respond to my questions and mail out paperwork. My partner at the time did some research online and inquired with Binder and Binder, a very well-known firm that handles disability cases. Charles Binder himself called me to ask about the details of my situation, which impressed me, and he was immediately helpful and kind. That phone call gave me hope that I could win. If you’re not comfortable with your lawyer or you’re not getting timely responses, find another one!

How did getting a lawyer make the process easier?

Working with a lawyer made every aspect of the process smoother. It is the main reason I was approved. Binder and Binder set me up with a lawyer local to me who was informative, knowledgeable, and responsive. He knew my local court system very well, as well as the judge assigned to me. He and his office filed paperwork with the Social Security Administration that would have been difficult for me to decipher, as well as collected and submitted relevant medical records and evidence—though I also did a lot of work obtaining my records, which I recommend all applicants do. He prepared me exceedingly well for my hearing, helping me focus on the facts that would be most beneficial to my case and telling me what to expect. He also presented my story to the judge in a way that did justice to the hell I had been through and it felt very vindicating.

How many times did you appeal?

Thankfully only once. I didn’t have to appeal after the hearing stage because I was approved, but my lawyer and I were prepared to do that. I believe there are two more stages of appeal after the hearing stage and they prolong getting a final decision by months or years.

How has being on disability made your life easier? Or, has it made your life harder/more complicated in any ways?

Getting approved lifted the weight of the world off my shoulders at the time because it provided immediate financial relief as well as Medicare, which is good quality health insurance that is accepted by almost all doctors. Prior to that, I had a health insurance plan that didn’t give me much control over what doctors I could see and often refused to pay for necessary visits and tests. And I was barely surviving on my income at the time.

I also received a lump sum of backpay, which is when the government pays you retroactively from the date you were deemed disabled up until your approval date. My backpay gave me a nest egg as well as more freedom to afford things I needed for my health. The figurative noose around my neck loosened and I was able to relax for the first time in years.

Being on disability is not without challenges, though. There is something called a “continuing disability review” that is performed at various intervals determined by the Social Security Administration, where they check to see if you’ve improved medically. If they decide you have (you don’t get a say in this), they stop your benefits. So your medical records need to show continued disability in order to remain eligible.

Secondly, and most upsetting, is they place limits on how much you can earn while receiving benefits. This means that many people remain in poverty because they can’t supplement their benefits enough to piece together a decent income. When you are sick enough that there is no alternative, you just have to accept this, but it feels pretty awful not to be able to improve your life in that respect. I am hoping to gradually return to gainful employment but I am endlessly grateful for this assistance in the meantime.

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

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