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When life changes overnight, the last thing you expect is to become an expert in disability benefits. But here we are.
For us, everything shifted when Tim collapsed on March 14, 2024, and seized for 48 hours straight. What followed was not just a diagnosis of PNES but a complete reworking of what life, work, and stability looked like for our family.
Applying for SSDI became part of that journey.
Applying for SSDI:
(and What We Wish We Knew)
What We've Learned
IMPORTANT: A NOTE FROM US
This page isn't legal advice. It's what we've learned through trial, frustration, and persistence in hopes it helps you feel a little less alone as you walk this road. Every situation is unique, so always check with the Social Security Administration or a qualified professional for guidance about your specific case.
What is SSDI?
SSDI (Social Security Disability Insurance) is a federal program through the Social Security Administration that provides financial support to individuals who are unable to work due to a qualifying disability.
Who Qualifies?
To qualify, you generally must:
Have worked and paid into Social Security
Have a medical condition that prevents you from working for at least 12 months (or is expected to result in death)
When Tim could no longer work after decades of showing up every day, this became a path we never expected to need, but were grateful it existed.
Start the Process as Soon as You Can
• One of the biggest lessons we learned: don’t wait.
• The SSDI process can take months, and often longer if you need to appeal. Even if you’re unsure, starting the application early gets the clock moving.
• You can apply: Online at ssa.gov • By Phone • In person at a Social Security office.
Documentation is Everything
• This process is built on proof. The more thorough your documentation, the better your chances.
• Make sure you gather: Medical records, Hospital visits and ER records, Medication lists, Therapy notes, A clear history of symptoms and limitations.
• With PNES, What’s happening doesn’t always show
up in tests. Detailed provider notes and consistent documentation are key to telling your story clearly.
Be Honest About Limitations
• How often your episodes occur, how unpredictable they can be, and how long recovery takes afterward.
• The ways PNES affects your ability to manage daily activities, responsibilities, relationships, and personal independence.
• Why maintaining consistent employment, attendance, reliability, or a regular work schedule is not possible despite your best efforts.
Expect Denial (and Don't Panic)
• Many people are denied the first time. It’s frustrating, but it’s also very common.
• If it happens: Don’t take it personally, File an appeal right away, Keep gathering documentation.
• We had to remind ourselves that a denial wasn’t the end of the story—it was just another step in the process.
Consider Getting Help
• You don’t have to do this alone.
• Many people choose to work with a disability attorney or advocate. Most only get paid if you win your case, and their fees are regulated.
• They can help: Organize your claim, Handle appeals, Communicate with Social Security
• When everything already feels overwhelming, having someone in your corner can make a meaningful difference.
Keep a Daily Log
• Track things like: Seizure/episode frequency, Triggers, Recovery time, Missed activities or responsibilities.
• And when it’s safe and possible, consider video recording some of the episodes. This can provide powerful, real-life documentation—especially for conditions like PNES.
Take Care of Yourself During the Process
• This journey is not just paperwork—it’s emotional.
• There were days we felt exhausted, uncertain, and stretched thin trying to hold everything together. You may feel that too.
• Give yourself grace. Lean on your support system. And remember—this process doesn’t define your worth or your strength.
You Are Not Alone
• If you’re here, chances are your life has been turned upside down in ways others may not fully understand.
• We see you.
• This process is hard—but it's a step toward stability, support, and progress.
You don't have to walk
this road alone.
If you choose to record:
Only do so when it’s safe for everyone involved
Respect the dignity and comfort of your loved one
Share recordings only with medical providers or as part of your SSDI case
Over time, both written logs and video evidence can help create a clearer, more complete picture of how the condition impacts daily life. For us, looking back, we realize how much those moments blurred together in the middle of everything. Having a record—something tangible—would have helped tell Tim’s story more clearly in
a way words alone sometimes couldn’t.
At Seizing Hope, we believe that even in the middle of uncertainty,
there is still hope and that sharing our stories can help light the way for someone else.
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