An often overlooked demographic, siblings of people affected by mental illness, are typically the longest living relatives, and potential caregivers or pillars of support for people with serious mental illness, as well as other disabilities. Despite this fact, and due to varying factors, this population is the least likely to receive support, education, assistance, or even a forum to openly discuss their concerns, worries, questions. Change is occurring, but all too slowly.
Many years ago, even parents were not provided adequate support for their children’s diagnoses. That has certainly evolved. There are many parents’ groups now and educational resources in print as well as online. It is immediately recognized these days that when a child is diagnosed with any type of disability, it involves the family, and providers march into action to address concerns with the parents. The siblings, however? Very seldom, even now in 2013, are the siblings’ needs thought of, mentioned, addressed. This is changing. Slowly. Very slowly.
As a person who was a sibling to a brother with a significant disability, I always knew something was missing in terms of support. I worried. I wondered. I worried and wondered silently. My parents did the best they knew how to do, and actually did it quite well. Most of their time was, of course, spent caring for my brother. Rightly so, and I wouldn’t have had it any other way. We sisters knew to not add to their distress by asking too many questions, adding to their tensions by letting them know of our concerns. There were times I was too embarrassed to have friends to my house after school because his behavior was odd. I did not understand. I felt tremendous guilt for feeling that way. I said nothing about any of it. There was absolutely no one who I could talk to. Who would’ve understood? As I look back I realize there were probably friends at school who had siblings with a disability, and maybe I could have spoken with them, but how would I have known who those students were? It sure would have been nice to connect with them – with someone.
One of the reasons that siblings have not been well included in the conversations over the years is simply that parents were/are trying to protect the sibs. They often feel it is their burden and do not want to share that with the sibs. Parents are intrinsically assigned to protect their children, after all. The intention is truly good. Another factor is that they just do not know how much to say, exactly what to say and not say, and are often thrown off by various ages of the kids and who should be told what!
The good news: A huge percentage of siblings of people with special needs grow up to be amazingly empathetic people themselves, are less likely to bully or tolerate bullying, and often mature into contributing via their careers in the helping professions. It is good to remember that there are joys as well as concerns that result from being a sib.
I plan to write blogs pertaining to the following specific topics: current available supports, one on nothing but the joys, one about shared concerns regarding who is to help out after the parents die, typical traits and common concerns of the sibs, one on statistics, one for the parents on best ways to communicate with the sibs, and so forth. With opens ears and arms I welcome your suggestions. SIBLINGS – what do you want to talk about?
In closing this initial sib-focused blog, I just want to say that as a mental health nurse working with people dealing with all sorts of illness and disability for my entire career, the siblings and I have always resonated, and my brother’s biggest gift to me was the compassion, empathy, and connection that was instilled in me to share with you. You are not alone. I hope you find the solace and sense of understanding, even belonging, that is here for you.
Lisa Croce, RN, BSN
To post a response to this blog please visit The Recovery Trust.
The Recovery Trust, a Colorado-based nonprofit, has added a new resource for families in need of education and support. It is a free, secure, online forum through which family members can join with others in the same situation.
The forum is moderated by a team of mental health professionals, psychiatrists, family members and people who have experienced mental illness, all of whom have received extensive training in their role as facilitators. Users of the forum can access a large database of information about these illnesses, FAQs and links to other resources.