Life with hemophilia is different for everyone. Those with milder forms of the blood-clotting disorder may pursue ambitious careers, including physically demanding jobs. Others with more severe forms might respond well to treatment, allowing them to manage their condition and work regularly. However, there are situations when bleeding episodes can make it dangerous or impossible to work enough to cover your bills. Hemophilia can also lead to joint damage over time that can become disabling and stop you from working.

Although a hemophilia diagnosis doesn’t automatically qualify someone for disability benefits, each case is unique. If you need to apply for benefits, here’s how the process works and some ways to increase your chances of getting approved for assistance.

How Do Social Security Disability Benefits Work?

In the United States, Social Security Disability Insurance (SSDI) is available to people who meet the strict criteria used to define a disability and who have worked (or are working) in jobs covered by Social Security. People who can’t work for at least a year may qualify for this monthly benefit. If you get approved, you’ll continue to receive benefits for as long as you’re unable to work and remain younger than full retirement age. Note that retirement age can vary from 62 to 67, depending on when you were born.

In addition to meeting medical disability requirements, you’ll also need to have enough work credits to be eligible for the program. One credit represents one unit of a specific dollar amount that you earned from your job (which changes every year). In 2024, the amount is $1,730. You can earn up to four credits per year, so once you make $6,920 in 2024, you’ve earned your yearly credits for this year.

To qualify for disability, you must have earned a certain number of work credits based on your age and the date your disability started. Usually, it’s 40 credits, and you need to have earned half of these within 10 years of when your disability started. You may be able to qualify with fewer credits, though, if you’re young.

How To Build Your Case and Apply for Disability

Applying for disability benefits is a complicated process. Not only will you have to fill out forms and provide documentation, but you’ll also need to be interviewed and share records of your employment history. You’ll have to schedule a specific appointment with the Social Security office and either go in person or have an interview over the phone. It takes about an hour but can be faster if you do some of the paperwork online beforehand.

The basic questions that will determine whether you’re eligible for disability benefits include:

• Are you still working?
• How severe is your condition?
• Is your condition on the list of disabling conditions the Social Security Administration (SSA) uses?
• Can you still work in your previous job?
• Are there other sorts of work you can do?

Hemophilia is listed in section 7 of the disability Blue Book, which details different medical conditions that could count as a disability. It’s considered a hematological condition and grouped with other blood disorders, including leukemia and multiple myeloma.

The first thing you’ll need to apply for disability is proof that you have hemophilia in the form of documented lab results or a doctor’s note. You’ll also need detailed proof of any hospitalizations (for your bleeding disorder or complications), treatments, lab work, and medical records. The more medical evidence you have to back up your claim that your condition prevents you from being able to work, the stronger your case will be.

If you’re approved for benefits, it typically takes five months before you start receiving payments. Your first payment will come six months from the date your disability started. However, if you had a disability for longer than that, and you meet the other criteria, you could receive benefit payments for up to 12 months from before you applied.

More than half of initial applications are denied, sometimes because of mistakes on the application that could have been avoided. Although it’s not required, hiring a disability lawyer to help can give you a better chance of getting approved the first time you apply. If you don’t hire a lawyer from the start, you can choose to seek a lawyer’s help with the appeals process.

When Is Hemophilia Considered a Disability?

Each disability case is reviewed on an individual basis, so there’s no black-and-white answer as to why one person gets approved and another doesn’t. The reviewer will consider all aspects of your case to determine whether you’re able to work.

Symptoms that could qualify someone with a blood disorder for disability include severe pain, fatigue, and malaise (discomfort). The reviewer looks at how intense your symptoms are, how often you have them, and how much they impact your ability to function.

If a hemophilia-related joint deformity, brain bleed, or other complication is the reason you can’t work, the reviewer will evaluate that aspect of your case under a different section. Hemophilia can be considered a disability if the reviewer feels you have a strong enough argument for being unable to work based on the combination of your ongoing health issues.

Frustrations and Successes

Members of MyHemophiliaTeam have shared their experiences with trying to secure disability benefits. “I have been turned down twice now for any disability income. I was told my husband makes $50 too much per month,” said one member.

Another member shared their story about the ups and downs of the process. “I’ve been in a state of depression since the SSA cut me off for making too much money working part time at Walmart. I was forced to retire and leave my apartment community. Since then, I’ve been in and out of court trials, fighting for disability benefits to be reinstated. My attorney said it would only be two or three years. It’s been almost 10. I had my fifth court trial and just received an email from my attorney. It looks like I’ll be getting my disability income reinstated by the end of this year.”

Others have been happy to get off disability and return to work. “Today, I returned to work after 3 1/2 years on medical disability. This is all thanks to the amazing gift of my new liver. #Grateful,” wrote another member.

No two situations are exactly alike, but sharing your journey with others (and reading about theirs) can help you feel less alone as you apply, reapply, or wait for disability benefits.

Talk With Others Who Understand

On MyHemophiliaTeam, the social network for people with hemophilia and their loved ones, more than 6,000 members come together to ask questions, give advice, and share their stories with others who understand life with bleeding disorders like hemophilia.

Have you or your loved one with hemophilia applied for SSDI benefits? If so, did you hire a Social Security disability attorney or complete the process on your own? Share your experiences in the comments below, or start a conversation by posting on your Activities page.