Applying for Disability Benefits With IBD: 3 Women Share Their Stories

Patient Expert

A chronic condition like inflammatory bowel disease (IBD) can turn your life upside-down. For some, the illnesses can be so severe that they make it difficult for you to continue working. In some cases, people living with IBD actually apply for Social Security Disability Insurance (SSDI) to receive benefits to support them during times when they are too sick to work.

HealthCentral spoke with three courageous women who successfully applied for SSDI benefits due to either Crohn’s disease or ulcerative colitis (UC). If you’re debating applying for SSDI because of your IBD, or maybe you’re getting ready to start the process, these women’s stories and words of wisdom may help and inspire you.

Niki's story: ‘I stopped sugar-coating everything’

Niki, 46, applied for disability following an emergency massive small bowel resection related to her Crohn’s disease. About seven years post-resection, she started becoming more fatigued and needed to decrease her work hours to two days a week.

She first applied for disability in 2003 and received it after being initially denied.

Niki was grateful to receive benefits because she nearly died during her surgery. When she started feeling better afterward, she was insistent that she didn’t want the benefits and wanted to go back to work.

However, in 2015, she decided she needed to reapply for benefits — but she felt awful about it.

“My heart was shattered,” she tells HealthCentral. She had to step away from her professional work and felt a major loss. “A lot of my sense of identity and self-worth revolved around my work.”

Niki recommends using the Internet to start the process of applying for disability, including researching the required documentation. When she applied in 2003, she worked with a disability lawyer, who also had UC, to represent her.

In taking the step of applying for disability, Niki had to get real about her struggles, she says.

“I stopped sugar-coating everything when I spoke to my medical team. I even made a summary of my functions to take to each visit, so they could clearly see what my day was like,” she says. She hoped this would help her health care team when assisting her with the application process.

Niki wishes she would’ve known that applying for disability isn’t a sign of failure or something to feel guilty about.

“It's a tough enough spot to be in, to have your health decline. If you need to do it, it's OK. We don't need to add another layer of emotional turmoil beating ourselves up. Be tender with yourself.”

Rachel's story: ‘You know what your body needs’

Rachel, 35, decided to apply for disability after she had UC-related J-pouch surgery in 2012. She tried going back to work, but she couldn’t make it through a work day.

She was 25 when she applied for disability. She calls it a bittersweet experience: “On one hand, I was relieved, but on another, I felt embarrassed and lazy,” she tells HealthCentral. “I was mostly worried about what other people would think about me, because on the outside I looked fine.”

When she first decided to apply, Rachel didn’t know how disability worked or where to start. She and her husband went online to research the process and eventually found where to submit the application. She waited six months for approval, and she was denied.

That’s when she decided to find a lawyer to represent her.

“A lawyer will not take on a disability case unless they think they will win the case,” Rachel says. “They will take a percentage of the back pay. When you apply for disability with your lawyer, they have you set a date of when you last worked, because if you get approved, the state will pay you for all the months that you could no longer work while applying for disability.”

With representation, Rachel got approved, and she has been on disability for five years now. She was also granted Medicare, and she encourages other patients to ask for this benefit, too.

The hardest part of the process for Rachel was the lack of income during the two years waiting for approval. She relied on her parents’ help, and she had to work through the stress it brought to her marriage.

Rachel’s advice is to not work while going through the application process.

“Don't let people make you feel bad for not working,” she says. “You know what your body needs. Do what is right for yourself. Your physical and mental health is priority.”

Lacey's story: ‘You aren’t in this fight alone’

Lacey, 25, decided to apply for disability when she was 18 because her insurance coverage ended when she was about to have a surgery related to her Crohn’s disease.

“Applying for disability at 18 made me feel pathetic and helpless,” she tells HealthCentral. “I didn’t want to be labeled, but I knew I needed help. I had mixed feelings with being ashamed.”

When she was finally contacted about her application, she had to answer follow-up questions, and then she had to go for an in-person appointment at her local Social Security Administration Office. She was denied benefits.

Despite the setback, she persevered: She appealed the decision three times in a row before she sought extra help in the form of representation. Finally, she got a court hearing.

Lacey was grilled during the hearing, she says, and was told she would receive a decision by mail up to six months after the hearing. Luckily, two weeks later, she received a phone call stating that she had been granted disability and SSDI. The next month, she received a full installment of back pay.

She recently received a packet for a full review of her current condition to see if she still needs disability, she says. For this, she had to gather all her medical contacts and records, information about upcoming visits, and all her medications. It was ruled that she was still sick enough to need disability benefits.

“If you're suffering from IBD and find yourself contemplating filing for disability, I say go for it,” Lacey says. “Don't be afraid to ask for help. If you need it, don't give up. It is challenging, but necessary to get. Help is out there. Last, but not least, know that you aren't in this fight alone. I battle this, others have, and you can! The trouble you're facing is just another bump in the road on the journey.”

Last names omitted to protect privacy.

See more helpful articles:

How to Apply for Disability Benefits When You Have IBD

How I Learned That Living With Crohn's Is a Team Sport

5 IBD Organizations You Need to Know