Hi everyone,
It’s been a while since I last posted, and so much has happened that I wanted to share and get off my chest. Life with epilepsy in my country continues to test my strength in unimaginable ways. Recently, the hotel I’ve been staying at for months found out about my condition and asked me to leave—at night, past 9 PM—while I was still sick. The stigma here is heartbreaking.
I found another hotel that night, but it was double the price of the first one. I had no choice but to look for somewhere cheaper the next day. The cheaper option I found was infested with mosquitoes and rats, making it impossible to stay there. I eventually returned to the expensive hotel from that first night, where I’m currently staying. The whole ordeal has left me drained, both physically and emotionally, especially as I’ve had several seizures recently.
In the middle of all this, I mustered the mental strength to make a long Twitter thread about my experience, hoping to raise awareness. Unfortunately, it didn’t get much attention. When I reached out to a few doctors on Twitter, asking them to help amplify my story, their dismissive responses crushed me even more. They said it wasn’t within their “jurisdiction” to help make my situation public. Sometimes, it feels like the whole system is a joke.
Still, I’m holding on to small victories. Someone reached out to me, offering $20, which is enough to almost cover two weeks’ worth of my medication. They also pledged to support me with a fixed amount every month, which gives me a glimmer of hope.
This week, I’m planning to create a series of videos to share my story further and, hopefully, garner the help and support I so desperately need. It’s been hard, but I’m focusing on the little wins and pushing forward as best as I can. At least I’ve got a small community of people who understands my everyday struggle and have been paid my support system.
Would love to hear your thoughts or any advice you may have.
Take care, everyone.
Owhen
It’s been a while since I last posted, and so much has happened that I wanted to share and get off my chest. Life with epilepsy in my country continues to test my strength in unimaginable ways. Recently, the hotel I’ve been staying at for months found out about my condition and asked me to leave—at night, past 9 PM—while I was still sick. The stigma here is heartbreaking.
I found another hotel that night, but it was double the price of the first one. I had no choice but to look for somewhere cheaper the next day. The cheaper option I found was infested with mosquitoes and rats, making it impossible to stay there. I eventually returned to the expensive hotel from that first night, where I’m currently staying. The whole ordeal has left me drained, both physically and emotionally, especially as I’ve had several seizures recently.
In the middle of all this, I mustered the mental strength to make a long Twitter thread about my experience, hoping to raise awareness. Unfortunately, it didn’t get much attention. When I reached out to a few doctors on Twitter, asking them to help amplify my story, their dismissive responses crushed me even more. They said it wasn’t within their “jurisdiction” to help make my situation public. Sometimes, it feels like the whole system is a joke.
Still, I’m holding on to small victories. Someone reached out to me, offering $20, which is enough to almost cover two weeks’ worth of my medication. They also pledged to support me with a fixed amount every month, which gives me a glimmer of hope.
This week, I’m planning to create a series of videos to share my story further and, hopefully, garner the help and support I so desperately need. It’s been hard, but I’m focusing on the little wins and pushing forward as best as I can. At least I’ve got a small community of people who understands my everyday struggle and have been paid my support system.
Would love to hear your thoughts or any advice you may have.
Take care, everyone.
Owhen
