No Safety Net

I live with several chronic conditions that make it hard and perhaps impossible to work.  Since February, I have been out of work due to these conditions.  With all of the other scary things going on in the country, it has been surreal to go through this personal struggle while so many other lives are also falling apart. I write this to shine a light on a system that has been harmful for people for a very long time, a system that causes death, homelessness, and suicides.  I write this to show that there is no 'charity' or government safety net to rely on while you wait on this horrible system.  

I have worked with people with disabilities for almost 2 decades so I know how difficult the whole system is to work with.  Even though I have had chronic conditions since childhood, I have been blessed to be able to work up until now for long stretches of time, but never full time. What I learned from my work with low income people with disabilities is that VERY few people do not want to work and contribute in some way.  For me, not being able to work is a devastating blow to my self esteem and sense or worth.  But, more than that, it means financial ruin and potential bankruptcy for myself and most people stuck navigating our archaic and torturous disability process.  

The Social Security disability process usually takes years to get an approval.  At the end of that process, some are left with under $800/month SSI or if you have worked enough quarters, a small amount based on what you have paid into the system.  For people like me who have disabilities that have affected them all their lives, their monthly SSDI checks are usually pretty small.  When I tell people this, they often bring up 'charity' as a way to help people during and after this process.  Nope.  There is no charity or government aid out there that acts as a true safety net.  For many this process causes homelessness due to the fact that one can't survive on NO money a month.  And most states have years long waits for subsidized housing for people with disabilities.  There are food stamps, but food stamps often don't pay for the whole of your food bill nor do many folks qualify who are in the 'gap' of making too much to get them, but too little to pay for food.  

When I applied for disability in March, I knew full well how difficult it is was.  However, with multiple conditions and a lot of medical evidence, I held out hope that I would be approved.  When I was notified in July that there was not enough medical evidence and I would have to go to their examiners so they could get more evidence, my heart sunk.  I knew that this was a VERY bad sign because Social Security's own medical examiners are often cursory and not accurate.  The first exam was with a male psychiatrist in an empty office in an empty building.  I mention this because I have PTSD and that alone gave me a panic attack the instant I got to the office.  He was extremely abrupt.  When I asked him to speak up due to  my hearing loss, he refused.  He spent the entire exam turned away from me staring at his computer with a mask on firing off personal questions.  I could barely hear him and was having a panic attack, but did the best I could.  I left feeling invaded and dirty; like I had just been violated by someone with no warmth asking me the most personal questions about my life one can imagine.  

The next month, I went to the physical exam.  I knew that these were notoriously worse than the psychiatric exams, but little did I know how bad it would be.  I went in and felt very sick and anxious.  My pulse was taken and it was at 150 which the nurse seemed to find alarming.  I then sat on a massage table for 30 minutes in excruciating pain.(due to my spinal conditions sitting in bad seating for longer than 5 minutes is horrific) The doctor came in and he also had a quiet voice.  I asked him to speak up and he also refused.  I tried to tell him about some of my limitations and every time I spoke, he cut me off after a few seconds.  He did a few balance tests and some cursory tests with my hands and arms.  I asked him about my pulse rate and he said it was nothing to worry about and slammed out of the room. In total, the appointment was 15 minutes.(at least the psychiatrist took an hour) After this appointment, I was even more upset and drove home feeling extremely despondent.  

A week later, I received a denial letter that was clearly based on the last exam rather than 100's of pages of medical evidence Social Security received from my many long term providers.  My primary doctor was completely appalled and told me the physical examiner said I had absolutely NO work limitations whatsoever and could even do physical labor.  I looked up the doctor's reviews and saw that many other people had the same experience.  I tried to complain to several sources and was either completely blown off or told there was nothing to be done.  It is completely wrong that this doctor, who is being paid by our taxpayer dollars, can ruin people's lives this way.  He is clearly not doing his job at all and getting paid to deny people.  Additionally, it is wrong that they can base someone's ability to perform a full days work seated or standing based on a few simple tests in 5 minutes in a doctor's exam.  I am appalled that this man will continue to do this to people and there is absolutely no recourse to change that. People with disabilities are often left with no recourse in systems in which there are serious and valid concerns.  Furthermore, it is terrifying to complain for fear of losing future benefits and services.  

When one gets a denial letter, one can either appeal the decision(which takes more than 1 year to wait for an appeal hearing before a judge), or one can re-apply and risk having the exact same thing happen at the initial level.  Either way, the process can take years while one lives with no money whatsoever.  Many people are currently un-housed as a result of this very inhumane system.  

This denial letter and the subsequent lack of recourse(and length of time to get a positive decision) has increased my already severe anxiety and depression.  I do not know how to survive or contribute to our household and we cannot live on one income.  My credit card debt is growing.  Mine is not a unique story.  There are thousands like me out  there, some on the verge of homelessness.  

Right now, there is so much financial ruin that it is hard to comprehend, but for many of us, it is not a new story.  Our societies' 'independent' pull yourself up by  your bootstraps' mentality makes it horrible for people in with new disabilities in this situation to reach out to anyone for help.  The judgment against us is strong and many question the validity of our lack of ability to work, particularly if we have invisible disabilities.  There is also an unspoken taboo in 'polite' society about discussing money woes.  All of this leaves us feeling extremely alone, hopeless and trapped with nowhere to turn for help.   More and more people like us are thrown away and forgotten with stories unacknowledged and hidden.  We are human beings who deserve to survive in a country that doesn't seem to care much whether we live or die.  

Yet Another Mental Health System Rant

Just heard a bit about another segment of the healthcare industry that I hadn't really had much experience with except with the occasional client and it got me thinking.   And wow, has my troubled mind gone off on a tangent about it.  So, I decided to go ahead and write a bit about it, even though my last blog post only received a measly 24 views.  :)

When one finds a small lump and it is determined that it needs a biopsy, one goes for a biopsy. During this whole process, one is treated with great respect and friendliness.   At that point the cells get read by pathology.  If the result is cancer, ones tumor is screened a whole team of experts who decide on the next possible treatment.(in my community's main healthcare system)  Additionally, one is assigned a patient navigator who helps one navigate the future treatment and appointments.  They will even go to doctor's appointments with you and follow you until remission or death.

Due to great strides and money into research for cancer, there are many cancers that are highly treatable and have good success rates if caught early.

Contrast this with treatment resistant mental illness which often has higher equal or higher death rates than certain cancers.  With treatment resistant mental illness, one is shuffled from one provider to the next.  Sometimes you are treated by someone who has no expertise in the field.  Imagine a cancer patient only being treated by their primary doctor with no input or time with an oncologist. Some therapists say that certain illnesses are too difficult to treat unless they are better controlled by meds, but then the meds aren't working either so you are left in hopeless limbo land.  Some doctors then might try to shuffle you on to ECT where one can become severely brain damaged. There is no team of experts that tries to figure out the best course of treatment and one receives NO navigation to help you with the system even though ones decision making and thinking skills are highly impaired by the illness. One is often treated in a condescending and disrespectful way by many professionals who get frustrated that one isn't 'getting better' and that their magic bullets are  not working. And since the treatment is often initiated in our medical system, providers are not taught to help people connect with solutions that might not fit tidily into the medical model. (like trauma treatment or community resources)

These illnesses are NOT highly treatable and many go from medication to medication to therapy to therapy with absolutely no relief.  In the US, 41,760 women died from breast cancer in 2019 and 48, 344 people died from suicide.

When one gets diagnosed with cancer, one gets casseroles, sympathy, and often an outpouring of support.  When one gets diagnosed with a mental health condition that is not very treatable one gets pushed away by their community who certainly doesn't want you to talk about your condition or know how to support you so they choose just to ignore you or let you fade away.

Those of us with these types of mental health conditions need a team approach that is holistic, respectful and kind.  We also need navigators that will help us connect to medical and community resources as well as find alternative non-medical solutions when there are no good medical solutions.   Treating our conditions deserves the same respect, time and effort as treating cancer. Instead of isolation, we need community and help with navigating the system just as much as any cancer patient.  It enrages me to see the disparity in treatment between the two, both on a community level and a medical level.

Disability Musings During a Pandemic

Imagine learning you won't be able to work and it is unknown when you will work again.  Not hard to imagine right now, is it?

Now, imagine knowing that there will never be an end to the situation that finds you out of work and that you will never return to work.

 Many of us with disabilities find ourselves in this situation and most people don't even notice or think about the devastation and grief that this causes for us.  There is a feeling of no ground underneath our feet, a feeling of deep fear and dependence on a system that we discover quickly doesn't work well at all. Additionally, we are taught that our work IS our worth and without it, we often feel and are taught that we have no worth.   In fact, doctors and others, are often uncomfortable acknowledging our inability to work because they somehow think we are being manipulative and just lazy.  This reaction from people in and out of the system, friends, family acquaintances reinforces that feeling of worthlessness and creates feelings of both shame and hopelessness.  In my 20 years working with people with disabilities, the majority of people I have met who find themselves in this situation want to work and grieve the loss of who they were and who they hoped they would become.(myself included)

Many people I have educated about the system have some assumption that there is a safety net for people with disabilities.  There really isn't much of one.  For many, it takes years to get a positive disability decision from the federal government and while they wait, they often have NO income.  In our state, some qualify for something called Aid to the Needy Disabled that they can get while they wait for their decision.  The amount is $217.  Imagine knowing that you can't support yourself and knowing that you will will either get nothing for a a few years or a measly $217 with a pittance of food stamps.  Many with disabilities end up homeless for this very reason. (imagine trying to find a place to rent on $217/month) And even if they get federal disability, the amount is not enough to afford rent and subsidized housings lists are years and years long. This situation will only be worse now with the pandemic and state and federal governments being completely strapped. It is not exactly a situation one enjoys finding oneself in, nor is it any kind of a situation where one feels secure or safe or even able to fulfill basic survival needs.

Not only is there little to no safety net, but for many of us, there is no treatment or cure for our conditions.  For many conditions the 'treatment' is sometimes worse than the cure or the 'treatment' does nothing to help and often creates other conditions.  (for example, psychiatric meds that cause conditions such as tardive dyskinesia or diabetes) Many become uncomfortable with our lack of ability to comply or fit in with regular society and think we aren't trying hard enough to find our miracle cure or that we have given up.  When, in fact, many learn that reaching out to our medical system often just creates more and more frustration and depression as one realizes one won't be returned to that elusive 'health' that society so wants for us.  Many of us might be able to work if we lived in a system that had more flexible work options and support to help us contribute through work or volunteering.  But, the system doesn't make this easy when, for some, you can lose health insurance if you work, or lose the benefits that took years to acquire.  We have systems set up to help people with disabilities find and keep work, but these systems are often overloaded and many get very little help from vocational rehab and other types of work assistance. 

It all leaves one feeling like there is no hope or reason to move forward when homelessness or complete financial devastation and bankruptcy may be the only answer.  And even if it isn't, the feeling of dependence on charity and others is depressing at best.  When I hear all this talk about the hope of returning to work and returning to 'normal', remember that for many of us, there is no 'normal'.  The normal for some might be a daily feeling of terror when one leaves one's house if one's skin color is anything but white.  The normal for some of us might be the feeling of fear and panic about how we will survive waiting on benefits that we don't even know we will get or how long we will have to wait. Or, most appallingly,  the normal of knowing that the elderly and the disabled were far too easily thrown under the bus by many in our society during this pandemic as a 'necessary' sacrifice for our economy.  And finally, the normal of knowing that we are deemed unworthy by a society that finds worth only in work and in 'persevering' in spite of obstacles. Some of us have tried to persevere, but for some, just surviving another day is persevering. 

This is all I have on all of this right now.  It leaves me with something I've known all along.  Our society does not truly care for the most vulnerable.  In fact, we are hidden away and, especially if we have mental disabilities, we are not spoken about.  Right now,  some just hope to kill us off.  People want to pretend there is a safety net so that they don't have to reach out and care and help others around them or even think about those who are faced with little to no safety net.  We want to pretend that work is what makes a person's worth instead of acknowledging the inherent worth in all of us. When you return to your new normal post pandemic, please don't forget that there are many of us out here who are, at times, unable to leave our homes, to participate in 'normal' day to day life, to work, to 'produce'.  We are here, we deserve more of a safety net and we are worthy of life and love.

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.