What I Learned While Applying for Disability Insurance to Manage Life with Crohn’s

Apply as early as you can — and be prepared for delays, denials, and emotional reactions to the process.

I was in my early 20s the first time one of my Crohn’s disease doctors mentioned that I should consider applying for social security disability insurance (SSDI).

At the time, I had just graduated from my undergraduate program and was starting my career. More than a decade later, I finally decided it was time for me to apply, and it was harder than I could have imagined.

Today, as I look back at the process, I think of how much I wish I had known then, and what I would have done differently to make it easier. I hope that by sharing my experience, others will have an easier time navigating the process.

Join the free IBD community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

The criteria for disability

To determine if someone is legally disabled and entitled to SSDI benefits, the Social Security Administration (SSA) uses criteria listed in what is referred to as the Blue Book.

The criteria for inflammatory bowel disease (IBD), which comprises Crohn’s disease and ulcerative colitis, are very specific and include such benchmarks as having bowel obstructions seen on imaging tests on two occasions over 6 months.

Additionally, you must meet the SSA’s criteria for work history, which vary depending on the age you are at the time you become disabled. If you haven’t accumulated enough work credits, you may still qualify for a different program, Supplemental Security Income (SSI).

Had I made the decision to apply for SSDI when my medical team first broached the subject with me or during subsequent discussions, I would have objectively met the medical criteria.

However, I waited until I felt like I had no other choice. By that time, I had had multiple surgeries, and the damage my body had sustained from them was more disabling than active IBD. As such, I did not meet the criteria for SSDI due to my IBD. However, I did meet the criteria under what is called equivalency.

This means that the collective impact of all of my conditions met the SSA’s definition of disability, which is “the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”

To make this determination, the SSA reviewed my medical records and sent me to additional medical appointments, including a psychiatric assessment.

The emotional fallout

Applying for disability was incredibly challenging for me. Not only did I have to accept that working full time was no longer something I could do, but also, I had to list out exactly why this was.

For years, to protect myself from the grief associated with having a lifelong chronic illness, I had focused on all I could do. Applying for disability forced me to name everything I could not do.

I had to admit on paper, to myself and strangers, that I had to take breaks and sit on the floor while grocery shopping when I became too dizzy or fatigued from chronic dehydration. I had to explain how I need to sit on a stool in my kitchen while I do dishes or cook, and I had to detail how my disability stops me from full participation in society and in my life.

The result of all the paperwork, medical evaluations, and initial application details left me in a deep depression. This process stripped away every ounce of mental self-protection I had.

To combat the depression, I became a more active member of a support group of other women who had faced similar situations and engaged in therapy.

My therapist asked me once, “Can you imagine yourself living a good disabled life?” At first, I balked and said, “no.” However, over time he helped me visualize how I could have a fuller life with SSDI than without it.

With his help, I realized I would no longer have to prioritize working over my health and I could spend much-needed time advocating for myself and adjusting my treatment plan to improve my quality of life.

Decisions and delays

It also took months to get a decision the first time, and when that decision was a denial, I was further devastated and demoralized.

I knew that most people were denied SSDI on their first application. Even so, the decision felt cruel. In 2019, the year I applied, only 36.9% of all applicants were awarded SSI or SSDI on their first application. At the first level of appeal, called reconsideration, only about 12% of applicants had success.

Though I appealed the first decision for reconsideration, I was not among that 12%. I wish I had known the statistics before applying, as it would have helped me to prepare for the emotional impact of the denials. However, after these denials, I decided to ask for legal help.

The benefits of legal assistance

I had hesitated to ask for legal help because I was under the impression that any lawyer would be entitled to portions of whatever benefit I received. While I was correct that most SSDI lawyers get paid from past-due benefits, I didn’t know the law capped the amount a disabled person would pay for legal assistance.

The current federal law about attorney’s fees explains that the maximum a lawyer can charge for a favorable decision is $7,200 or 25% of the individual’s back pay, whichever is less.

Having legal assistance made a significant difference.

Instead of just having my records sent to the SSA for them to sift through — which is the procedure I followed on my own — my lawyer advised me to obtain letters from each doctor on my medical team, detailing how my various Crohn’s symptoms created functional limitations. For example, they explained how dehydration can result in tachycardia, which then causes dizziness and makes it difficult for me to walk or complete certain work tasks.

I believe these letters were critical in the favorable decision I ultimately received.

Additionally, my lawyer took over the responsibility of filling out all forms and keeping track of paperwork and court dates that the SSA sent.

Because I was disabled and sick during this process, having these responsibilities taken off my plate was a huge relief. It was also a relief to have my lawyer help me identify the most important parts of my case.

No time like the present

Not applying sooner is probably my biggest regret. Not only would I have met the Blue Book criteria for IBD, which would have made the entire process a bit smoother, but I would have received more money.

The amount of your monthly SSDI payment is based on a complicated formula that averages your lifelong income. For me, waiting to apply meant that the much lower income I earned in the years immediately before becoming disabled was factored in. As a result, my SSDI benefit is lower than it might have been.

Receiving disability sooner would also have saved me from months of extreme poverty when I couldn’t work. I was lucky, as my family could help me pay my rent and bills during the process. Nonetheless, it was emotionally difficult to rely on others to pay my bills.

The takeaway

Applying for and receiving SSDI is a challenging process that I wish I had begun as soon as my medical team first broached the subject.

Even though it is a difficult process, lawyers can help considerably, and in the United States, federal law caps how much they can be paid.

Finally, having a supportive community and mental health support during the application process helped me to grieve the loss of my ability to work full-time and create a life that allows me to place my health as my number one priority.