Nobody really talks about the caretakers when someone is disabled. they don’t see the person quietly holding everything together in the background.

I live with TL Epilepsy and PNES (psychogenic non-epileptic seizures), and moments like this one in the store are scary, exhausting, and honestly embarrassing sometimes. But for my boyfriend, it’s also a lot. He has to switch from “we’re just running errands” to “I’m now her caretaker” in two seconds. He’s grounding me, keeping me safe, dealing with people staring, while also keeping our daughter with autism calm enough for him to assist me, trying to stay calm while his brain is screaming “please be okay.”

If you’re a caretaker/partner/family member of someone with Epilepsy, PNES, or any chronic illness:

you. are. everything. 🫶

You don’t just help with episodes you help us feel safe enough to even leave the house. You’re allowed to feel tired. You’re allowed to be scared. You’re allowed to have feelings about how heavy this is and still be an amazing caretaker. You matter just as much as the person who’s sick.

To everyone else watching: please remember that scenes like this are not “drama” or “for attention.” This is real life with disability. If you ever see something like this in public, the kindest thing you can do is not stare, give space, and offer help if it looks needed.

🔔 PSA about filming:

This seizure was recorded for medical reasons, not for content. Whenever possible, my seizures are filmed so my medical team can see what’s happening in between appointments. In this case, I had a weird feeling coming on, put my phone in my purse, sat down because I started feeling bad, and it just so happened to land at the “perfect” angle to catch the whole episode. We didn’t stage this. We didn’t set up a tripod in the middle of a store. I literally tossed my phone in my bag and hoped for the best so my doctors could review it later.

If you’re a caretaker out there doing all of this and more: I see you, I appreciate you, and you are not invisible. 💜

#seizuresawareness #pnes #awareness #caretaker #fyp

2025/11/20 Edited to

... Read moreLiving with Epilepsy and psychogenic non-epileptic seizures (PNES) presents not only daily challenges for those diagnosed but also immense emotional and physical demands on their caretakers. PNES are seizure-like episodes not caused by abnormal electrical activity in the brain but are real and involuntary episodes that can closely resemble epileptic seizures. Caretakers must quickly adapt to crisis situations, providing grounding, safety, and comfort while managing the reactions of others around them. The OCR content reveals a poignant reality: caretakers often perform seizure first aid protocols meticulously, regardless of the seizure type. For example, laying the person on their side is a crucial safety measure to prevent choking and injury. This response is essential even for non-epileptic seizures because many individuals, like the author, live with both epilepsy and PNES simultaneously. Moreover, caretakers face intense emotional burdens, as they balance remaining calm in public settings while confronting feelings of exhaustion, fear, and frustration. They must also provide stability for other family members, such as the author’s daughter with autism, during these episodes. The psychological impact on caretakers is often under-recognized despite their indispensable role in enabling individuals with chronic illnesses to participate in everyday activities outside the home. Bystanders witnessing seizures frequently misunderstand these episodes as 'drama' or 'attention-seeking,' which only adds to the stigma and stress of both patients and caregivers. Public education and awareness, as highlighted in the article, are critical. The kindest and most appropriate response from observers is to avoid staring, respect personal space, and offer help if it appears necessary. In addition to emotional support, filming seizures—when done respectfully and for medical purposes—can be invaluable. It allows healthcare providers to analyze episodes outside clinical settings and tailor treatment plans more effectively. However, as the author explains, these recordings are never staged; they happen naturally and are meant solely to assist in medical care. In summary, caretakers of individuals with epilepsy and PNES are the unseen heroes who provide safety, emotional support, and stability. Their work enables those affected to live fuller lives despite the unpredictability of their conditions. Recognizing the heavy toll caretakers bear and offering them understanding and support is just as important as caring for the person who experiences seizures. Everyone has a role in creating a compassionate environment that respects the realities of disability and chronic illness.

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