When Stigma Isolates The Caregiver
Alone we can do so little; together we can do so much.
One of the reasons I am so passionate about the voices of those who are caring for loved ones battling mental illness is because they are part of the casualties of Stigma as well. Mental health family caregivers find themselves in battles with insurance company customer service representatives, we are the frontlines for Behavioral Health professionals, and primary care physicians over the care or lack of care for our loved ones. We face scrutiny from our families, friends and public as we go about protecting and caring for loved ones who may at one time or another be incapable of caring for themselves.
Because mental illness is still viewed as an invisible illness we are accused of enabling loved ones who are “capable” of caring for themselves and are “choosing not to do the right thing”. I have heard stories of caregivers who have gotten into “knock down” drag out fights with family members because a loved one was so severely depressed they were practically comatose and a family member rushed into the house and dragged the loved one from the bed in an effort to force them out of the house to “get a job”. In another instance a wife was agoraphobic and the husband forced her out of the house and drove her to a public place and forced her to sit on a park bench in a busy downtown park. Her adult daughter moved her in with her and the other siblings insisted she was enabling the mom and alienated her at the fathers request.
There are so many more stories I could share that would bring you to tears over the insensitivity that caregivers and the loved ones they care for endure. Personally I was told by a family member who has a psychology degree, how I should put my son out of the house because he was just being irresponsible and taking advantage of us. I was told that Bipolar disorder was not that bad and that the medicine didn’t make them tired or sick. I believed it and set about enforcing more rules and insisting that “pretending to be sick” was over. It wasn’t until I spoke with an individual at a state hospital in the waiting room who was there to see a loved one struggling that the medicine did in fact make them ill and that the depression was very much debilitating. I also came across two people on social media who were very open and honest about their journey to mental health living with Bipolar Disorder. I gained a whole new perspective and more appreciation for what my son was enduring and fighting. I understood I needed to hear what he wanted and not operate from a place of judgement.
One of the very reasons I suggest to caregivers to read books and watch videos by people actually living with the disease is because it’s a different perspective when you speak to someone who has lived with the disorder and is effectively managing the disorder. There is no cure for Bipolar Disorder as my family member misled me to believe in my beginning stages of our journey. There is the possibility of living with the illness and learning to effectively manage the symptoms. That is what changed my journey as a "support system" for my son.
I couldn’t understand the effects of depression or anxiety until they became my story and I had to learn to live with them. I also learned from people who were living with the illnesses and how to manage them. I learned to personally manage myself and when I was feeling burnt out. I learned what my triggers were. It was all about education. Education is the key to ending stigma. Every opportunity I get to share with someone what it is like to live with depression and anxiety I do. People fear what they don't understand.
I strongly believe we have another level of compassion we reach when we have experienced a life event personally, have someone we love or who are close to us go through it, or we sit and speak with someone who has and really listen.
Many of us caregivers after we realize how therapeutic talking about our experience as a caregiver is and how hearing others experiences take away the feelings of guilt and grief, feel very much at home discussing our emotions or experiences in with people. I am very vocal about the experiences I have as a survivor and as a caregiver, I speak honestly about it because I want others to know they are not alone. I want others to know it’s okay to not be okay, and to hang in there for their loved one instead of giving up and leaving them to fend for themselves.
If you are a caregiver please don’t give up on your social life. Please join or start a caregiver support group so that you may speak to other caregivers like yourself and gain or be support as well.
Until more of us have the courage to come out and to speak about the “taboo world” of mental health caregiving and of living with a mental illness stigma will continue. Being the voice for our loved ones and ourselves means more people learn about mental health and how important it is.
Whatever you do caregiver don’t stop fighting for your loved one, don’t take to heart the naysayers and the critics, keep researching and learning how to be the best support possible to your loved one. Keep taking care of you and your needs first because without your health your loved one suffers as well.
Do not isolate yourself believing you are alone and no one cares. You must understand if you can't find your tribe...build it. Don't sit and feel sorry for yourself. Get out and go to the local mental health or behavioral health facilities you are bound to meet other family caregivers there and between the few of you someone can cook and all of you can meet at a church or library to be of support for one another. Don't give into lonliness.
May today bless us with whatever makes us successful, and may God bless us real good.