I am a person with mental and physical disabilities, who has a daughter who also does and who has worked for almost 20 years with people with disabilities who have also struggled with the mental health system. For the past few years, my lifelong depression has increased in intensity along with PTSD and extreme anxiety. One of the things I struggle with the most is conveying my struggle to others. It's sometimes easier to talk about my ongoing pain, but when I try to talk about my depression, I often feel shut down and misunderstood. Sometimes it feels that no-one wants to hear it. Like my chronic pain, it does not seem curable and this frustrates people who want to fix my pain. Depression feels like a slow slog through a darkness where it seems impossible to reach out, and often impossible to live another day even though I know I must. And when I do reach out, I feel like I have had doors shut in my face because the 'treatment' that's out there has not helped my chronic pain or my mental health issues. I feel the burden is mine alone to carry with very few answers. In fact, knowing the ins and outs of the system due to my career is a bit of a curse because I know all the limitations of our current system.. For both my daughter and I, who have both hit dead ends, this life without hope for a better future is both debilitating and lonely. It is not for lack of trying, but when one suffers from baffling and debilitating conditions, the constant struggle of reaching out and falling back down gets exhausting. I do try, but I don't know if folks who haven't been there understand how hard it is to keep trying.
I struggle with telling my own story because the judgment towards mental and physical limitations is still very much a constant in our society. We value productivity in our society so intrinsically that when one cannot work, it is hard not to have an added layer of shame. Somehow, in my own depressed and irrational mind, I also feel like I have failed my oldest daughter because she, too, cannot seem to move forward in a traditionally successful way or find help for her ongoing medically baffling issues. I do hope that sharing my story helps others who are in similar situations, so I keep trying.
Do conventional treatments work? Sometimes. Are they easy for most people to access? Almost never. From early childhood, I struggled with depression and anxiety. After great trauma at age 16, my depression became so severe that I stopped eating and almost died from starvation. My parents, who were certainly good parents, did not get help until I was close to death due to the shame, stigma and denial. I was eventually hospitalized.This hospitalization traumatized me in many ways. The treatment was mostly behavior modification treatment and felt extremely punitive. It made me feel worse about
myself than I already felt. I received the little real ‘treatment’ here. The only thing it did for
me was leave me with a determination to change the system, to never be hospitalized again
and left me with a deep distrust of medical and mental health providers.
Fast forward several years and in one very abusive dysfunctional relationship when my oldest child was born. Imagine trying to recover from your own trauma from an abusive relationship with a person with significant mental illness, while also struggling with lifelong depression and having a child who has extreme mental distress from the time of birth. Imagine trying to find treatments that work for her only to hit dead ends. To watch this child escalate into terrifying explosive behaviors and extreme emotional distress in adolescence. To reach out for help through crisis lines, clinics and more only to be told: ‘you have to wait at least 6 weeks for an appointment with a doctor’ or basically getting very little true help. To have to tell her much younger sister that there are no magic answers and that we just have to survive through this chaos with hope that maybe someday we will come upon something that will help. And to explain insurance to this same sister and the fact that money and type of insurance limit the amount of care and types of treatments her sister can get. Imagine watching this child grow into adulthood, experience ‘mental health holds’ where she went in desperate for help and got little treatment and no follow up. Imagine seeing this child find the only med that helps the most severe part of her illness and see that med destroy her quality of life through chronic ongoing fatigue. Imagine going to doctor after doctor trying to get help to address these physical and mental health issues only to run into doctors who saw her for short time periods that never looked at the whole history or took the time to really figure out the best interventions. Imagine knowing that this brilliant creative child’s dreams have been scaled back to just surviving through another day. This child is trying to heal. This child is trying to love. But she has been failed by our system. Over and over again.
Imagine once you can breathe a little being hit by your own unhealed issues. PTSD, depression, chronic pain and other physical issues , most, a product of abuse suffered many years ago. Imagine trying to find help and finding few doctors that understood chronic pain and being dismissed because of your history of mental health issues. Knowing that your pain is interlinked with your mental health and past trauma but finding few providers that know how to address this. Imagine having physical conditions that preclude the use of psychiatric and other meds, but finding out that most providers see meds as the only tool in their tool box and don’t seem to understand that meds don’t work for everyone and that side effects are worse when one has certain physical conditions.
I am trying to recover in the face of these obstacles. My daughter is trying to recover in the face of these obstacles. But, we are not finding the help we need and due to lack of money and type of insurance, we are stuck with limited options.
We need a system that has long term transitional options post-crisis for people that desperately need them and respite for families who are enduring the day to day struggle of living with someone with significant mental health issues. We need a system that understands the interrelated connections between physical and mental health issues and treats both with respect. We need a system that has true coordination with all medical and mental health providers to treat the whole person rather than separating body and mind. We need a system that truly understands and knows how to treat trauma.
We need a system that, instead of penalizing people that are unable to make it to appointments due to physical issues, works together with them to find a way to makes things work. We need a system where front line people who like receptionists, police, hospital staff are well trained and know how to treat people going through crisis with deep respect. We need a system that doesn’t shame people for trying alternatives when conventional methods fail to work. We need long term and transitional housing options for people with psychiatric disabilities. Trying to heal when one is homeless is next to impossible. We need workplaces that destigmatize mental health issues and work with people to ensure equal access for all disabilities including psychiatric disabilities. We need a system where people experiencing extreme mania or psychosis are treated with dignity rather than being turned away or treated in a punitive manner. People experiencing these issues should be treated no different than someone experiencing an acute physical crisis.
We need a system that supports the whole family of someone living with mental illness and gives them real solutions. We need a system that sees ALL people as contributing members of society and encourages participation in work, volunteering, etc rather than enabling isolation and segregation. Finally, we need a system that treats each individual with deep respect and dignity and does not look at those with mental illness as ‘separate’ but rather as fellow human beings. People need to reach out and include us rather than avoiding us and avoiding talking about difficult issues. It needs to be understood that so many of us are out here trying everything we can just to live another day, hanging on by a thread and hoping beyond hope that things will get better. We are your sisters, your mothers, your brothers, your fathers, your friends, your coworkers and we are people who deserve respect, connection, friendship, love and treatment that works, that is individualized and that is easy to access. Most importantly, we need hope and as it stands now, that hope can be hard to come by for many of us.
