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.  

Dances with the Devil

My experiences with the medical profession, while annoying, have not been deadly.  This post is dedicated to all those who have died due to inept practitioners who don't take the time to listen to the person as a whole; practitioners who may not be completely to blame in a for profit healthcare system that is failing miserably.  The title of this post may seem extreme, but I want it to be clear that the 'devil' in this case is not the doctors, but, a very broken healthcare system. 

When I was a teenager, I was hospitalized for anorexia. I remember, as if in a fog, the 6 weeks of so-called 'treatment'.  My treatment mostly consisted of a psychiatrist who could not seem to get it out of his head that I was abused by someone I wasn't abused by. Mostly, it consisted of being watched while eating and threatened if I didn't.  I remember being watched continually, strange group therapy sessions, and being moved down to 'level 1' because I would not participate in a movie discussion. When I knew my insurance was done paying, I told the nurse the night before that I would rather die than end up in another mental hospital.  She reported me as being suicidal.  I called my parents and told them what happened.  The psychiatrists could use this so-called suicidal ideation to get an extension through my parent's insurance company.  But, my parents knew this place was not helping me.  They actually listened.  After the hospital, I did not get better right away but was able to find some alternative types of therapy that actually started to help a little.  These mental hospital experiences gave me a lifetime mistrust of doctors and helping professionals in general.  At 16, I could see that the so-called treatment I was getting was really not based on who I was and offered me little in healing my underlying issues. 

When I was 19, my foot was ruined by a podiatrist who insisted I needed bunion surgery when I had little pain, just some bunion deformity.  For many years after the surgery, I struggled with pain.  I could no longer run and it was difficult to cross country ski.(2 things that I had loved for years) As the years went on, I became unable to dance, another love of mine.  Finally, I was told that the initial surgeon set the bone wrong.  20 years later, I had another bunion surgery to re-set the bone with the promise it would take away my chronic pain.  It didn't work.  I was told recently that having 2 surgeries on that joint have actually exacerbated pain in my other toe joints. When my other big toe gradually became extremely painful, I was told by a doctor to wear Birkenstocks for a year and it would cure the pain.  Two years later, I was told the joint was so deteriorated by arthritis that the only option was joint fusion.(apparently, Birkenstocks didn't work-surprise!) The interesting part about my foot story is the first doctor was most likely motivated by the money he would get for an unnecessary surgery and did not look at trying non-surgical options first; whereas, the second doctor did not listen at all to how much pain I was in but instead gave me cursory advice in his quick visit before moving on to his next patient.

Perhaps the most frustrating recent experience with doctors has been my experience with medical advocacy with a close loved one and my dad.  In my dads case, I repeatedly told his doctor that his medication was causing agitation and the doctor basically ignored my concerns. This medication was known to have this type of side effect in the elderly, but she dismissed me repeatedly.  In my loved one's case, I see doctor's leap to crazy conclusions about her condition based on tiny parts of things she says. (I won't go into detail, but I will say it is laughably ludicrous) They continue to look at symptoms instead of taking a careful and thoughtful history to determine the best course of action.  Perhaps most importantly, I see them continue to throw meds at her with often less than 15 minutes spent talking with her.  These medications have had devastating effects on her life and may have done more harm than good.  There are still no answers for this loved one and the last visit with a so-called specialist was one of the most demeaning and patronizing appointments I have ever witnessed. In both cases, I have seen doctors baffled by conditions that are not easily 'fit' in a box with no quick fix in sight.  This bafflement, I believe, creates a bit of hostility towards a patient that does not respond well to traditional interventions.  Instead of being open to non-medication interventions in both cases, doctors just throw up their hands and keep falling back on the same old prescription playbook that clearly is not working. 

And finally, my experience working with people with disabilities punctuates my experiences with the medical system with heart wrenching tragedy.  Countless clients have struggled with chronic conditions, with very little compassion and great frustration when quick fix treatments don't work. With certain insurance, like Medicaid, clients were not even able to get second opinions because of the lack of providers that take Medicaid.   I can think of at least 2 clients who are dead because the symptoms they reported to doctors were not taken seriously and they died of aggressive terminal illnesses. Clients fought for years with a healthcare system just to be heard, just to get some kind of treatment that was meaningful.  Some died, some deteriorated and some walked around with an extreme sense of grief and hopelessness feeling like there were no answers. These experiences are not unique and many with disabling conditions are left feeling powerless in a system that is supposed to be designed to help them.

Our fee for service health care system has made health care a business where doctors are paid by treatment, not outcome.  Doctors are conditioned by insurance companies to throw people into simple 'boxes' so they can be paid.  Prescription drug companies have become like car salesman, creating pretty ads, aggressively courting doctors to promote and prescribe their drugs and passing advertising costs on to the patient by increasing prices for medication.  With the costs associated with dealing with health insurance, primary doctors and specialists are often forced to book short appointments.  There is little time to look at the 'whole' picture in this system.  We fail people with chronic conditions in a world that is centered around billing, symptom treatment, and prescription drugs.  Instead of looking at a person as someone with a complex health history who needs equally complex and thoughtful treatment, doctors are forced to look at separate symptoms, throw some meds at the person, and move on to the next patient.  As referenced before, the results of all these things leave patients feeling completely powerless and often, sicker.

Incredibly, in this system there are still 'good' doctors that thoroughly examine and take careful histories of clients.  In the past year, I was blessed to have one of those doctors for my youngest daughter.  This experience surprised me, and it shouldn't have.  This type of doctor should be the 'norm' not the exception in the medical field.   In my personal experience as a care provider for loved ones and my own personal experience, I know the devastating feeling of waiting months for a doctor only to have them completely dismiss your issues.  For some, this dismissal could be deadly as some get tired of fighting and give up.  As patients and caregivers, we complain about these issues.  We complain and complain, but then we run from the idea of 'socialized' medicine as if it is a demon.  I honestly cannot a imagine a bigger devil than the fiasco that is our current healthcare model.  We need to open our minds and demand better.