Tuesday, February 21, 2017

Consumer advocates


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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