There is a stigma associated with mental illness. Is there a stigma associated with Alzheimer’s disease too ?
I was asked to give a talk on schizophrenia and once again I realized how many needy people there were; people who had not managed to relate their schizophrenia stories and get feedback from someone who had been there, done it, lived with it for 16 years.
Every time I give a talk, people ask me for my contact information. What astounds me is although I give them very personal information, they prefer to talk to me in private. And I understand where it is coming from and I don’t mind as I take every single phone call and meet with people who have specific questions. I repeat that I am not a professional, only a mother who has experienced mental illness in her family. But, if we parents do not speak freely about our children’s mental illnesses, how will we ever manage to lessen the stigma associated with it?
After my husband was diagnosed with Alzheimer’s disease, I realized that there was a stigma to that as well. I met men and women who were unable to talk about their spouse’s dementia. Some no longer invited people over and others no longer went out, saying that their lives were over. I decided that I would try and keep the basics of our lives as ‘normal’ as possible, so I continued having friends over, always inviting two couples so that the men would be able to chat as my husband did not talk much. We visited friends, watched the odd movie and walked along the beachfront. Together, hand in hand, we waited until the sun set over the Mediterranean, a spectacular sight indeed.
If people were able to talk about Alzheimer’s and Schizophrenia, there would no longer be a stigma. I know that it is not easy. It took me a long time to be able to say; “My son is suffering from paranoid schizophrenia.” But, once I did, it was so much easier. Keeping it all inside of me did not add to my health.