It's All A Freaking Nightmare

For several years now, I have advocated for my medical care to save my life both mentally and physically.  I have suffered for years now with deep daily physical and mental pain with very little relief.  Answers and meaningful treatment are hard to come by for many of us.

I have had many physical symptoms that are often moved through the medical system with testing, and eventually, I'm told "everything's fine" and then friends, relatives and medical providers say 'oh, that's great'.  No, it's not great when you have unexplainable things like a random racing heart, sometimes severe upper right quadrant abdominal pain, severe daily bowel and stomach issues, severe chronic joint pain in several joints, unexplainable severe fatigue, progressive hand weakness and so much more.  (and that's just some of the unexplainable stuff)  When you don't know what it is, you can't treat it well and the feeling that elicits is devastating hopelessness.  My significant cervical spine issues are one of the few issues that can be seen through testing, but surgery made things worse and now I'm left with no answers and adjacent disc disease from the fusion surgery.  

(Side note: I have also received diagnoses from specialists that my primary doctor or my pain doctor sent me to, and then both of these doctors just ignore the diagnoses completely and don't address them even when I bring them up. )

So many times, I hear the phrase, 'get help, treatment is out there' in relation to the mental health system.  This isn't true for many of us.  The system is broken.  Many of us have unbearable side effects with meds and it is SUPER hard to find a therapist that actually helps.  And many therapists do not have the cultural competence to work with people with disabilities or chronic illnesses.  To reach out for help and be met with complete misunderstanding and in some cases, incompetence, is one of the loneliest things I've ever been through.  

I grow tired of the daily worry of long-term financial stability. (The Social Security system isn't built for people like me with chronic, hard-to-diagnose conditions. Will I get SSDI? I doubt it.  Can I work?  Not right now and I don't know when, if ever) It's been over one year since I applied for disability and doubt that I will find out anything positive anytime soon.  Our Social Security system also makes it difficult to work while you wait(even a little bit).  If they deny people because they can use a computer or watch TV, they most likely will deny anyone who tries to work.  

I know that many people like me are living on the streets of America right now.  I should be more grateful, but making comparisons has never helped, nor has gratitude.  

I know I must not be the only one. I want to be able to work.  It is not 'fun' to hang out at home knowing you cannot work or be productive.  It's also pretty freaking lonely.  

It is difficult fighting this battle that few understand with very few allies. I often don't want to talk to others about it because they grow sick of hearing this pain that is my daily life(and the fact that it doesn't get better).  After years of trying so many treatments and providers, I have realized that physical and mental health providers often have little clue what I am going through with no clue how to help. Even the ones I have considered thoughtful and decent don't seem to want to delve further into certain things even when I ask.  (like losing the use of my dominant hand.. they don't seem to want to look any further into that at all and keep completely ignore it when I bring it up because one test that was done turned up no answers) 

And then, watching a close loved one go through the exact same struggle with our broken system is just too much to handle. 

I go on for those I love and who love me and don't want to lose me in their life.  And for the animals that depend on me.  

In a society that values success stories and pulling oneself up by one's bootstraps, my story is not an 'inspiration'.  Even folks with disabilities don't want to hear others complain about the difficulty of disability.  The disability community talks of disability pride and more. But, sometimes, when the system is so woefully inadequate and throws up so many barriers, disability just sucks.  

I know that thousands of people like me are out in the world fighting this same battle.  Perhaps even more now that folks are experiencing long-term complications from COVID 19.  If I had the energy, I would fight to change all of this, but that is why we are forgotten: many of us don't have the energy to keep fighting.  Some end up homeless.  Some end up dead.  Many do fight and keep trying to change things and hopefully, someday we will change the system with our collective small efforts.  

Desperate for Change

Last year, around this time, I presented on mine and my daughter's struggles with the mental and physical health system to a group of community leaders in my county.  At the time, I didn't post my speech, but am posting a hybrid that adds and subtracts a bit after a year of reflection and another year of things only getting worse.  

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.  

Our Tragic Legacy of Hiding

Since last week, I have been in heavy 'musing' mode, struggling to find the words to thoughts that overwhelm and disturb me.  So many times I come face to face with the issue of secrecy, hiding and shame and it seems like it is beyond my abilities to address it.  It is so deeply embedded in our society and our families.  Our ability to communicate and listen, to confront, and to soothe is so badly damaged that people are literally dying both quick and long deaths because of it.

This post is for the woman living in fear of a husband who abuses her, who hides this from everyone because he is a 'well respected' member of his community and no-one would believe her; a woman who suffers more than anyone should ever suffer without community to support her.

This post is for a man with mental health issues who lives in perpetual suffering in his head; who fears reaching out because 'men just don't do that'.  Even if he did reach out, the methods of 'care' are sadly lacking because of our deep ties to the pharmaceutical industry and our inability to find better options.  Options that may be more available if we, as a society, had just learned how to question, how to look deeply and confront wrongs and find better answers.

This post is for the sexual abuse survivor who tells small parts of her community her story, only to be shunned, ignored and sometimes even ostracized; a survivor who learns that hiding is better because that's the message society gives her.  This survivor loses key supports by isolating and those who 'know' are often left to carry a heavy burden themselves, without community, without communication; sickening whole communities of people.

This post of for the gay teenager living in a small religious community, who hides a major part of who he is for fear of ostracism and sometimes worse; a teenager who may become addicted to alcohol or drugs or even kill himself because the price of hiding is just too great.

This post is for the person who grieves the loss of a close loved on in secret because our culture puts a 'timeline' on grief and looks down on long term expressions of grief ; a person suffering in silence instead of sharing a load that may be made lighter just by the sharing of it. 

This post is for countless others who hide parts of themselves, who hide parts of their stories, because there is no support out there for them; who, when they do share their stories, are often ignored or diminished in sometimes deeply wounding ways.

We are as sick as the secrets we keep, the shame that we hold on to and are terrified to share and release.  This shame isolates all of us and teaches us to shut our hearts down in the face of pain.  It separates us from other people; diminishing our sense of community by closing all of us down to the pain and trauma that is merely a part of human experience. 

We learn from this culture that some things must be hidden.  Our deep hurts, our grief, our traumas, our addictions, our illnesses all must be hidden away.  We are taught to 'hide' and  'move on'.  Our children are taught that tough situations must be hidden, that its better not to talk about major trauma.  This hiding and suppression is deadly to both children and adults alike.  Those of us that refuse to hide are often ostracized.  Hiding our trauma often leads to addiction, physical and mental health issues. The traumas that happen to one person often affect entire communities with a dark and dysfunctional weight, a legacy of shame and pain. 

We cannot afford to keep hiding.  Our children deserve so much more than the society that they are born into.  They deserve communities of support where they can express things that torment them without fear and surrounded by love. Without expression of our deep sadness and trauma, we can never experience real joy.  All of us deserve a place where we can be open about trauma, where it is not a 'dirty little secret' that we carry around while it silently kills us.  We can no longer run from those things that make us uncomfortable. Those who are suffering deserve so much more than silence and avoidance. We all deserve so much more.

My Daily Nightmare

I live in a nightmare of daily worry and torment.  Someone I love deeply, who shall remain anonymous, struggles with daily physical and mental torment that daily makes this person want to die.  I struggle with my own demons, my own issues.  But, always, alongside this is a daily shadow of  my loved ones' struggle.  This darkness is deep as often it seems there is no hope.  The drugs that are out there don't help and life for this person becomes a monthly stream of trying new ones and then going through awful withdrawals to get off of them when they do not work.  I get angry when I see articles about people with mental illness that say that 'there is treatment out there'.  Is there?  For some, it doesn't seem that there is.  I know that my loved one's struggle is the struggle of millions and my struggle is the struggle of millions of loved ones.  Knowing we are not alone doesn't make it any easier.

Our system is woefully broken for these people.  All of us should have the chance to live and thrive. But, for some of us, that dream seems impossible.  Seeing dreams of the future slowly fade away is heartbreaking for our loved ones and those around them.  We see little options that haven't been tried. Seeing someone's main aspiration in life become living without unrelenting chronic pain, sleeping through the night and just being able to have a day of feeling at least somewhat o.k  seems so minimal, so sad for someone who has so much to offer this world.  But, everywhere we turn there are dead ends.  People tell us to act on behalf of our loved one, but they do not know how few the options are, how many have been tried and how many have failed.  They do not understand why the person cannot just get a job or go to school or live independently.  Our loved ones do not have the external image of someone with a severe developmental disability, but their disability is just as profound.  And for them, the options are fewer.

Other countries have more expanded options for people with mental health issues.  The Open Dialogue model in Finland is one that has proven success with less pharmaceutical intervention.  Our pharmaceutical lobby is so powerful that we often destroy the lives of people with mental health issues, treating them like guinea pigs when there are other interventions available that are never tried. Some medications are literally disabling, especially with long term use.  Community supports are often few.  People are often isolated in a peer group where they see the same issues all around them and learn helplessness. Programs are punitive to ensure 'medication compliance.  Mental health 'professionals' and doctors minimize the effect of withdrawal from psychiatric medications in spite of evidence to the contrary.  It is no surprise that in our country, there is a suicide every 13 minutes.  

My loved one and I live this daily nightmare with no hope in sight. There are thousands out there experiencing the same nightmare. I wish I had a magic wand to take away my loved ones' pain.  To fix everything so that she could blossom and grow and give to this world.  But, I don't.  And the extreme helplessness I feel follows me around like a demon. There has to be hope out there somewhere and we all must struggle on to find a better way.