How Support Makes a Difference in My Journey

When I was 13, I first started experiencing what I would later know as "twitches." At the time, I didn't think much of it and simply shrugged it off. But as the years passed, the episodes became more frequent. When I was 16, a paraprofessional at my high school noticed and suggested I go to the nurse’s office. That visit led to a doctor's appointment to try to figure out what was wrong. My mom was upset, but in our Mexican household, not much attention was given to medical issues like this.

Eventually, after seeing several doctors, I was referred to a neurologist and diagnosed with juvenile myoclonic epilepsy (JME). Fast forward to now, at 25, my diagnosis has changed to intractable generalized idiopathic epilepsy without status epilepticus, which is also drug-resistant. This year, I’m likely to receive a VNS implant to help manage the condition.

In the beginning, it was really hard, but over time, as I started talking about epilepsy more, I became more comfortable with it. There was a time when I’d cry just thinking about it, and I’d refuse to explain why I couldn’t do certain things. But now, being part of an online support group has made a huge difference. It’s helped me realize that I’m not alone in this, and knowing that others understand what I’m going through has made it easier to cope.

Throughout this journey, I've faced some unique challenges, including how my family viewed and treated me differently. But today, I am surrounded by unconditional love in my four-year relationship, and I have my family's full support.