Over the course of the long reading list, one common
source of frustration was how often businesses or government entities will look
right past your humanity. I am not a gadget, but I am also not a product. I don't
want to be seen as a customer or a brand or anything where I get reduced to a
market value. That will be explored further, but one book gave me a different
take on seeing yourself as a customer:
The Day the Voices Stopped, by Ken Steele
I read it for hope. Depression, PTSD, and eating
disorders were most common among my people, and there were some with bipolar
disorder, but schizophrenia was relatively rare. There were still some cases,
including with one of the girls I got especially close to. In addition,
although schizophrenia can be more dramatic in how it distorts reality, there
were still a lot of distorted perceptions with the eating disorders, and
dangerous voices inside their heads with the depression. It was important for
me to know that could stop.
The book was very affirming in that sense, but there
was another lesson that I am starting to understand now. Steele's experiences -
often horrific - led to him becoming a mental health advocate, and it was
centered on treating the mentally ill as consumers rather than patients.
It sounded odd to me at first; there are illnesses
being treated. However, thinking as a consumer instead of as a patient focuses
on choice, and it means critical analysis on the performance of the doctors.
Let's go back to that friend who was sure that the
talking cure was the only real remedy for depression, and that medications were
only valuable for the assistance that they could provide on the way to a cure.
At the time I thought that meant his issues were probably more traumas that he
needed to work out, rather than any chemical imbalances - all of which seemed
reasonable based on other things that I knew about him.
I have since had two other thoughts, neither of
which really contradict the first thought. One is that I suspect this is what
his therapist told him, influencing that belief. Also, if he could believe
that, then his therapist was working out for him.
I am glad for that, but it is not automatic. I read
an article a couple of years ago that I can't find now, but it was about one young
woman's attempt to find the right therapist, and it took her four or five
attempts. Sometimes the therapist was at fault, like the one that was
romantically interested in her (huge red flag). If you are trying to heal from
abuse, an excellent therapist whose features or voice are similar to your
abuser may not be able to get very far. But also, maybe you just need someone
who used a different method, or doesn't have a prejudice against the religion
that is important to you, or someone with a different perspective.
There are a lot of different ways that things can
work out. Timing can be a factor. I know someone who tried desensitization
therapy. It was not working then, but over time she was able to build up
strength for the stressful activity; maybe it can be sped up for some people
and not others. The human mind is a complicated part of a complicated species.
That frustrates people. Dear friends will tell you
that you need to get over something, and try practicing tough love on you. It
might help, but it might not. People who have had success with one type of
therapy will be sure that it's what you need, but may be ignorant of many
contributing factors that affect how it will work for someone else. And your
doctor will go by many past patients, which may not work for you.
Ken Steele faced a lot of terrible side effects over
the years. Some of that was probably due to the medication still being
developed; we have more and better options now. He was at times harmed by
doctors not listening when he would tell them how a certain medication made him
feel. That's why patients need to be able to fire their doctors. That's why it
helps to be able to think as a customer.
There have been some advances in mental health
parity, but there are shortcomings in coverage for physical health too. There
is also a line drawn between physical and mental health which can be somewhat
illusory.
I looked into becoming a home healthcare worker for
my mother. I was told that her needing supervision was not enough; she would actually
need to require help getting dressed and feeding herself and things like that.
I know of other cases where admittance into a home that is needed due to
dementia is not covered because it is only affecting the mind. These are issues
that cause real distress for families, and they are also ones where the patient
cannot be their own advocate.
That may seem like a case where a consumer mindset
won't help, but believing that things can and should be better may be easier
for someone remembering that the people you are dealing with are being paid for
their answers. They are employees. Maybe you need to go up a level to a
supervisor. Maybe you need to push for consumer protection and broader
offerings.
I am thinking now of someone in treatment for
anxiety and depression that has become debilitating and who is not making much
progress yet. I do believe in that "yet". Maybe she needs more time,
or a different combination of medications. Maybe she needs to change care
providers.
There can be a lot of hassle involved in that, so
success is going to require two things. One is that belief that improvement is
possible. For all of the pain out there, I see improvement all of the time. If
one path is not working, it does not mean there is no hope for you. It may mean
that you need to change directions.
And because there can be so much hassle and
discouragement, there should be support. Reaching out and trusting can also be
hard, but we can all work on making that easier. We can be more understanding.
We can be more informed on how things work. We can be kinder. We can listen to
hear the things we don't know, instead of trying to make everything fit into
our comfort zone.
We can be there for each other. And we need to.
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