More empathy from stranger's
"We are really on our own in this world of Epilepsy.Julie Clark (mum)
No one truly understands the life you're living. Now that just may be human nature. It may be fear of the unknown. You get the 'can I help' 'phone me if you need anything' is everything ok'
No everything is far from ok. Actions speak louder than word's ever will.
We are isolated. We are ostricised in our own lives.
We would get better support and help from stranger's. My Son the first Complex Needs Child in the Family.
Are they ashamed?
Are they too wrapped up in their own lives to bother with us?
Are they just being judgemental
Epilepsy is not contagious and you cannot catch it from someone.
It's really a shame that people cannot see by this invisible illness....The Stigma attached still, to this thousands of years old condition very rife in 21st century.
It should not be like this. Epilepsy needs the same focus and Media attention as other illnesses now.
Awareness needs very much out there in the public sector and domain.
The funding globally needs made available for Research.
My Family needs to know that my account of the last 15 years with my son's Epilepsy has not been a 'walk in the park'
I am literally grieving my Son in front of me. Focusing on today as who knows what tomorrow will bring."