Voices Across America

Migraine, Fibromyalgia, and Why SSDI Is So Important

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Kelsey

State: California
Congressional District: CA41

Diseases

Chronic Pain, Mental Health, Migraine

Issues and Challenges

Kelsey has encountered: Copay Issues, Insurance Issues, Surprise Billing, Disability, Discrimination (nonmedical), Gaslighting, Invisible Illness, Job Insecurity / Loss, Prior Authorization, Step-Therapy / Fail First

My Story

I’m Kelsey and I’m from Southern California. In 2012 at the age of 16, I started getting migraine attacks. Those attacks started as episodic, essentially 2 to 3 a month. Though, eventually those episodic attacks progressed into chronic migraine in 2021. By 24, I had attacks EVERY single day. This is when I decided to finally see a neurologist. I was diagnosed at 24 with refractory chronic migraine. Getting attacks every day completely changed my life. I went from one of the best employees at my job to being told they “missed the old Kelsey.” This was also a time where I found myself in a very dark place. I felt completely alone, no one around me had experienced migraine to the degree I had. Through this, I stumbled across the migraine community on Instagram and Twitter. I felt seen for the first time in my chronic illness journey. Feeling inspired I started my own account to share my journey. It took me almost a decade to seek help. If I had sought help earlier, there was a chance I could’ve prevented myself from getting daily attacks. I chose to share my story and educate others so they could avoid the same fate.

By 25, I had to go on disability. I couldn’t work anymore no matter how hard I tried to. My condition was debilitating to say the least. At 25, I was also diagnosed with fibromyalgia. So not only was I fighting the pain in my brain, but my whole body was working against me. Taking time off work has given me time to decompress and remove work stress from my life. I’m taking the time to try and get back to baseline. I need to focus on self-care and working didn’t allow me the time or energy for it. I hope to focus any energy I get on taking care of myself and advocating for my communities.

My Motivation and Inspiration

I’m motivated by the work of other patient advocates.

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