Why Sharing Your Caregiver Story is Important

At first I was super nervous to even talk about my caregiver journey, I mean who really cares what a caregiver of someone with epilepsy or any chronic illness has to say? Most want to hear from the person dealing with the illness, not the caregiver.

I thought about that for a while and I know that my daughter's seizures and her Epilepsy journey is her own, I cannot speak for her unless she gives me permission, I'd prefer she talks about her story herself .

I am her mom, I'm allowed to attend her doctors appointments , write in her journal & talk about how I help her day to day, living with epilepsy and photosensitive epilepsy lifestyle. I constantly ask in advance and am granted permission.

Caregivers see things differently

We respond differently, we record things differently in journals and we remember things at appointments that the patient may forget. Memory can sometimes be a concern for those with seizures, my own daughter has had that issue, that's why I always recommend journaling, especially the difficult days. Make your journaling entries short buy to the point, this helps the doctor plan a personal care plan specifically for the individual patients needs. Take that journal to every appointment.

I'm going to share something with you, I write in my blog and the other day I needed help from the website folks to help me with an issue. When you write in that blog entry, you never know who is reading your advocacy work, whether your a patient, caregiver or otherwise. I'm sending you an email review from the website folks (enclosed photo).

Keep using your voice, caregivers. Keep writing, keep stomping out stigmas.

Quote

" One day you will tell your story of how you overcame what you went through and it will become someone else's survival guide. "- ice T

Signed Lorrie F

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