This can mean helping someone find a doctor, helping them come up with questions to ask or ways of phrasing things, making phone calls from location to location, and sometimes even showing up to physically advocate for someone.
There are many people who I have been able to help in some small way and it was enough for them to be able to move out of trouble enough not to need me anymore. There is one core group of people, however, who no matter how hard I advocate, what strings I try to pull, what privileges I bring down to bear, I never seem to manage to get through to their primary caregivers enough for them to start receiving the help they need.
These are the friends who continue on for years without diagnoses, experiencing the absolute worst possible care, almost as if they were a magnet for every single incompetent doctor in the system. As if they somehow bring out the worst in doctors so that even people who had in the past shown themselves to be good doctors completely fail when it comes to these people.
To the outside observer, the statistical likelihood of what they face seems impossible. To reference a kid with cancer episode of House, it would be like someone with one super rare cancer, getting another super rare cancer at the same time. That CAN’T be the answer. Clearly these people must be personally doing something wrong to be causing the medical system to fail them so badly. Since SOME good doctors or at least competent ones exist out there, or else we would all be dead, then clearly the problem has to exist outside of the doctors themselves.
But just like in the episode someone pointed out that the little girl had always been very sick and so what seems like an improbability is actually not unlikely, the statistical likelihood is actually irrelevant because of underlying circumstances.
They’re right that the problem ultimately exists outside of the individual doctors themselves, but they’re wrong about the wounded patient being the cause. Instead, the problem exists with the way the whole system itself is designed. The problem exists with a critical misunderstanding on the part of almost everyone: the doctor, the friends, the nurses, the therapists, the outside observers, everyone.
It’s the same problem we face again and again when it comes to chronic conditions, be they mental health issues, physical health issues, diagnosed, undiagnosed, intermittent, or otherwise. The problem is the extent to which we as human beings have an incredibly hard time conceptualizing something that is constant and ongoing and without a tangible or conceivable ending point. This is especially the case with regards to things that maintain themselves without our conscious effort.
It’s the existential headache that comes from trying to imagine something that has no end or no beginning. Some people treat that headache as being a sign of the divine. Still others treat it as an impossibility simply because they can’t conceive of it, and many do some combination of the two. Either way, it is something that people frequently avoid thinking too hard about.
I’ve talked previously about how this concept impacts how patients get treated in the ER – making it more important to “act” the right way and say the right things so as not to end up treated like a drug seeker.
When I wrote that post, the response was overwhelming. I had several people contract me with their stories after it was published, and a few sites even tried to reprint it without permission. The sheer number of people who felt the need to contact me and share with me that the same thing had happened to them is just one of the symptoms of the integral flaw in the system that leaves certain populations of people horrendously underserved – EVEN- when they have access to medical care.
It’s because most therapies focus on healing based on the idea that the traumatic inciting incident, the “root cause” of all the problems, have passed. It’s about helping you move on from what happened and putting your life back together again.
The “Trauma” is in the past and not something you are currently living through and therapy focuses on helping you retrain your brain away from the illusion that you are caught in the middle of a war zone when actually you are at home and someone’s car backfired.
The problem is that for people coping with chronic problems – be they mental health, physical health, or even chronic exposure to abusive social systems (More on this one later) – the trauma isn’t passed. It’s happening right now.
This isn’t counselling the army vet after the war, this is counselling the army vet while they are standing behind enemy lines with shells flying all around. Meanwhile you are telling them that it’s just a car backfiring.
Very often, the source of the trauma is the medical system itself.
There are different demographics that have been shown to be underserved when it comes to diagnoses, treatment, and so on. Women and people assumed to be women but who are other genders, for example, often find that doctors simply blame any type of pain on menstruation or pregnancy, regardless of whether it makes sense. That or their symptoms were believed to be exaggerated. People who are overweight are frequently told that their weight is the cause of whatever is wrong with them, even when the weight is a symptom rather than an original impetus. The list of ways that racial minorities are underserved and underdiagnosed is so long as to necessitate an entire blogpost to itself.
Being jerked around by a biased system when you know something is wrong is traumatic.
Being gaslit into believing your problems are all in your head is traumatic.
Being treated as though you are a drug seeker as you desperately search for some answer, some solution, to your pain is traumatic.
When every trip to the doctor comes with the risk of being treated like you are lying, or trying to game the system in some way, the very act of going to get help becomes ridden with anxiety and additional stress. The doctors office becomes a place of fear and anxiety. Each visit becomes fraught with unnecessary tension. It becomes harder and harder to seek help at all.
When someone who is a part of this same system that has been instrumental in our trauma then tries to tell us to move on and that it’s over, its not just an example of someone ignoring our reality. It literally becomes a case of being gaslit by someone who is part of the abusive system that is responsible for your ongoing trauma. It actively becomes another instance of abuse.
When it happens in a session that is nominally supposed to help you heal from the psychological effects of trauma and abuse, it just adds to the overall feeling of hopelessness. How are you supposed to heal when every healing session just leaves you freshly wounded? How are you supposed to maintain the belief that things will get better someday, if the very things that are supposed help make it better actively hurt us instead.
Even when the trauma isn’t directly related to the medical field itself, there is an element to which this continues to be true for any type of trauma that is the result of systemic systems of oppression. In denying that they exist, in denying the many roles they play in continuing to retraumatize us, you are participating in the act of abuse. Gaslighting is a form of abuse after all.
Even when therapists understand this, however, they still struggle with the obvious reality that their therapies in that case are insufficient at best, and actively harmful at worse.
Their suggestions for how to cope, often ignore the realities of our lives.
If it hurts to move, if it causes us pain to be on our feet, then going for a walk isn’t going to do much to improve your mood. Then growing a garden to reduce your food expenses, or spending a lot of time cleaning your apartment, are not within the physical realms of possibility.
If we cannot afford our medication, if getting our medication is an ongoing source of stress, then it doesn’t do much to remind us to take it regularly. It doesn’t help to have the dose increased or be told to try taking it at a different time.
If every month is a struggle just to make ends meet, and there is little possibility of that changing as long as people believe that disabled folk, or those on welfare, are worthless, then acting as though our problem is just a matter of trying harder, or budgeting better, or filling out a few online surveys, is to ignore the many ways that these systems are self-reinforcing. Then failing to recognize the psychological toll that living in such circumstances is to fail at addressing a major contributor to the problem.
If your depression, anxiety, or physical symptoms are reinforced by the constant struggle of being part of an oppressed population, of never being able to relax because you have to spend every waking moment just trying to survive, then being exhorted to reduce our stress is about as helpful as kissing a booboo is at mending broken bones. It ignores the question of just exactly how we are supposed to do that.
Instead of acting as though the situation is one of not trying hard enough to get better or to move on, instead therapists should look at ways to help bolster their patients. To find coping strategies to deal with ongoing traumas and difficulty, rather than relying on a framework that treats the abuse as something occurring in the past.
The reality, however, is that most therapists and doctors will instead act as though the failure of their various treatments or therapies is the result of some failing on the part of the patient. An unwillingness to get better causing the therapies to fail, rather than a case of the treatment or therapy being inadequate or wrong for the current circumstances.
Therapists and Doctors should be some of the leading voices calling for improving disability and welfare assistance to make them actual forms of assistance, rather than a punishment for daring to be disabled in an inaccessible world. They should be advocates for their patients in helping them get access to services that will make their lives easier; a resource to help find what services they are entitled to and eligible for.
They should be some of the leading voices in helping to reorganize and redevelop a medical system that wasn’t created with the expectation of chronic patients or the need for ongoing care.
If their intention really is to help their patients, they need to abandon their devotion to outdated systems and therapies that fail to address the realities of their situations, and instead work with the patients in these circumstances to develop new systems, new treatments.
If their intention really is to help people, then they need to be willing to address their own biases and work on routing them out since they impact the quality of care they provide.
I can’t just move on from a trauma that isn’t over yet. I can’t just pretend that the unfair practices that act as barriers to adequate care don’t exist. I can’t just “get over it” when it’s literally killing me. And any doctor, therapist, social worker, healer, nurse, or other healthcare practicioner who fails to recognize this becomes part of the problem.