Wednesday, November 28, 2012

When Psychiatric Patients Are Also Parents...

by Stefania Electriclady 

...This is the title of the presentation I held at the Milano WAPR Conference, on November 12th. It was the first time I spoke about my experience as a daughter of parents with a mental illness in a public context in my country, Italy. Fortunately the lights of hope in a better future for the next generations and the love that links me to my father and mother, in addition to the strong bond grown in the last two years with the peers I met on the Internet who advocate for COPMI in their countries, helped me fight against my fears and go straight to the goal of trying to give a voice to Italian children of parents suffering from a mental illness.

Everything started back in 2010, when my mother had her third serious manic relapse and I started looking for information on Google. Thanks to my language knowledge, a passion and an ability I inherited from my parents, I had access to many resources that opened my eyes to a new truth that had been lying underneath for so many years: I wasn't the only one and all my feelings related to my parents' illnesses were true and meaningful. For the first time in my life, in my 30s, I discovered I was one of the million Children of Parents with a Mental Illness. I could relate to the stories shared on the net by other daughters and sons living abroad and couldn't hold back the tears. I cried because finally I had found who I was and why I was the person I am. My lived experience had been validated by the stories of others who had decided to share them! It was painful but liberating at the same time. I then decided to do the same for people in my country and thus opened my own blog, "Mia Madre E' Bipolare" (My Mother Is Bipolar), which attracted more than 20,000 visits in less than two years. 

When I was fifteen and everything started to crumble in my own family, Internet was not available for everyone in my country yet. Therefore we were really isolated and lonely in our personal family tragedies. It was really hard or even impossible to vent out and I remember a glassy shell growing around me with which I was still able to "function" in daily life (at school, with friends...) without bursting out in tears in front of other people about what was happening at home, yet with a deep feeling of loss always accompanying me. Internet is nowadays truly making the difference for us all, permitting anyone who wants it to talk to other daughters and sons freely about their experience, without feeling judged or pitied, to share helpful resources and build joint efforts to advocate for the rights of our families and especially for children and teens who often don't have a voice to get the support they need. 

The First International Young Carers Congress, held in Vancouver in May 2012, has been the crowning of the little "miracle" made possible by social networks. I there met for the first time in person Maggie, Melisande, Christophe, Paola and Nerrelle and we presented together about the role of social media for system change. Back in my days of pain and suffering, I would have never imagined one day I would have been flying across the ocean to speak up for the scared young girl I once had been, to use a painful experience as plant food for a future better outcome for families like mine. Face to face meeting with my peers I had until that moment only known online has been an amazing experience that blew my mind and enriched me with positive thinking, helping me pursue my effort once back in my country.

Vancouver is also important as it validated my lived experience as a nonprofit blogger, founder of the first Italian community for "daughters and sons" and the daughter of a bipolar mother and of a father who suffered from major depression as - besides other reasons - a consequence of the negative spiral triggered by my mother's illness. This validation helped me find a "space" to advocate in my own country, as it lead me to the invitation to present at the Milano WAPR Conference in a symposium about Forgotten Children. My special thanks go therefore to Contatto Onlus, a nonprofit organization who got interested in planning preventive interventions in their operating area in Milano. 

It's not easy for me to speak in public in general, imagine about this topic! Also, a great fear was, and partly still is, that my "coming out" could create problems to my mother and my family. Being open about a mental illness in our family is a delicate issue for many of us daughters and sons, that may prevent us from venting out or taking action openly. It took me a lot of time to get to the stage in which I am now, trying to find the right balance to build on this effort and, at the same time, respecting the choices of the people I love and who prefer not to disclose informations about the illness. This aspect may explain why presenting in a congress like WAPR has been such a challenge for me. 

Now that I have achieved this important goal, I may say I am truly proud and happy not to have let fears win over hope. Despite the many difficulties I encountered (stigma, anxiety, feelings of rejection, prejudices, etc.), I feel like I've walked the first of the long series of steps needed in order to enlighten the big iceberg that is still hidden in our homes. We definitely need to bring to the attention of society and policy makers that there is a big number of familes who are yet not seen by services. I am talking in particular about the daughters and sons of parents who aren't aware they have a mental illness and therefore are refusing treatment. I have been speaking to nurses, social workers, psychologists and psychiatrist and even people belonging to family members' associations and it struck me how invisible we are even to people who are starting to become more sensitive to the problem! I heard people say that children of people with psychosis and deliriums refusing treatment are just a few exceptions and I had a hard time trying to explain that the fact that services don't see us doesn't mean that we don't exist. Proof of that is the high number of e-mails, facebook messages and comments on my blog written by daughters and sons whose parent(s) are not in treatment. So part of my effort during my stay in Milano has been pointing out the urgency to find effective ways to reach these children, too. 

Obviously the best way to help them is to also help their parents, but in all those cases in which services can't intervene on parents (as the law states that people can't be cured against their will), we can't leave their kids alone. This does not mean, as some professionals may think, that we need to take these kids and teens away from their mentally ill parents, but that we, as a society, need to offer them tools to cope, become resilient and not to lose their own potential. Therefore I really tried to focus on the urge to translate the existing books for children of parents with a mental illness in all languages, to work with schools, with family doctors and media and start a system change. 

I know it's not something that can be done in one day, but at least we can start. Families who struggle with a mental illness and their children can't wait. Prevention is the key, but in order to prevent we need to build a common language, bringing down the walls that divide us into categories and prevent us from working together for the same purpose. I've witnessed a lot of stigma and reserve and it has not been easy to face them. Still I understand that making people aware of us means for them having to revise a whole system of thought and belief and this may cause defensiveness and denial. 

Talking about my story and also listening to researchers presenting about our families hasn't always been easy, as painful memories often arise from the past and deeply hidden "scars" may reopen. This reminded me that when we are advocating we always need to remember that we have boundaries to protect and that we need to take care of ourselves in order to keep the energy that we need for a longlasting effort. I noticed that this is another key issue requiring our attention, as professionals are not always aware of the risk of emotional draining we are exposed to when participating in these events. 

In the end, I am truly honored to have had the opportunity to give my contribution for children of parents with a mental illness in my country, but, as you can imagine, I can't wait to see the efforts finally turning into Action! I know I'll have to be patient and faithful...but I firmly believe in the power of the domino effect and maybe the first little domino block has finally been pushed. We'll see!