Do I Want to Live Like That? Long Term Disability Insurance
Here's what I've been wrestling with: do I appeal my private disability company's denial of my insurance claim? According to them, I am no longer disabled. I think their reasons for doing so were completely bogus and could be easily rebutted. I have multiple chronic conditions, I continued to be treated for those conditions. There was no improvement; on the contrary, I was diagnosed with an additional autoimmune disorder, newly diagnosed with PTSD, and my ongoing medical records show steadily worsening of symptoms from 2004 through the present.
However, here's the rub, two rubs actually: one, putting together the materials to rebut them is extremely stressful and time consuming. I know that I could do it, given that I have 180 days to appeal, but the stress, brain fog, and fatigue it causes are not good for me [Duh, I'm disabled.]
Two, being on that insurance means that I subject myself to the threat of surveillance, both in person and online. It's legal and common for them to film claimants in anytime they're visible in public: They can park on the street and film me in my yard. They can film me walking the dog. They can film me at the grocery store or in the parking lot at my doctors. They can seek out any information about me that's online, including news articles, public Facebook posts by me and others, posts in discussion boards.
I know they can do this in general because they routinely do it to others and the courts have said it's legal. I also know that they've done it to me. As one part of the appeal process, I requested their dossier on me. It includes their communications with a surveillance company and the information this company was able to find on me. I've been careful, because I value my privacy very highly and I know that any activities can be taken out of context to support whatever case they want to make. Still, the company collected information including the fact that in the last year or two, I got married, I took photographs outside, and I stood on a beach. Damning, I know. They searched to see if I was a member of any professional groups, had any new publications, or had any other kind of public involvement. They found nothing after the date I became disabled. Previously, they had requested that I provide the url of any blogs I had; I refused to give them that because I don't think they have a right to access my non-professional writing, which includes political views and views about their company. This writing is not relevant to the question of whether I'm disabled or not.
They also tried to do in-person surveillance but were unable because they did not know where we were during that time period. This was when we were relocating to the Southwest and staying at several different temporary locations in our rv, prior to settling in the Taos area. We used a mail processing service in a different area of the country so that we'd receive our mail during this time, since we had no permanent address.
They are regularly request my medical records from all of my doctors, and provide me with forms that I have to be sure my doctors fill out. The forms ask the doctors to evaluate my disability status. The insurance company is free to call my doctors and ask them questions about me. I'm also required to get doctor notes from every one of my doctor visits, under a short deadline.
Anyway, the point is: If I appeal this denial of insurance benefits, I'm agreeing to put myself back under their surveillance. I don't want this. Living under the threat of surveillance changes the way you live, the way you experience the world.
Knowing that I'm under possible surveillance, every time I leave the house, I'm imagining how my actions will be interpreted by the insurance company. Every time I do something on the internet, I'm doing the same thing. And not only can it be recorded, it will be taken out of context and interpreted without my having the opportunity to provide any explanation.
Any interaction I have with my doctor, anything he says on the spur of the moment during a telephone conversation, or anything he or his office records in my medical record is subject to the same surveillance and mischaracterization.
Living under this surveillance is hell. It changes the way I interact with my medical care providers, the things that I do any time I step outside, and even the way I think about myself. There's the constant question in my mind: How will this look to the insurance company? Can this activity or statement be taken out of context to show that I'm not disabled?
It sows self-doubt and self-questioning and makes me feel like a fraud. Instead of behaving in a natural way and doing the things that are best for me, I'm always asking myself whether or not I'm behaving sufficiently disabled in their view. When I interact with my doctors, I'm not seeking to get the best medical care, I'm trying to be sure that I am able to get sufficient and accurate documentation of my medical condition. I 'm trying to manage the behavior of the doctor to be sure that she records the right kinds of things for the insurance company (for example, the ways in which my condition effects my activities of daily living). When I do things in public, I'm not focused on what's best for my body and what it's capable of at any given time, I'm thinking about how the action will look to the insurance company. For example, it's good for me and my doctors have advised me to engage in gentle exercise. So taking a yoga class or using a recumbent bicycle at the gym, walking the dog or walking from one store to another instead of driving, going to the farmer's market or the library---those are all good for me, but can also be filmed and taken out of context as evidence that I'm not disabled.
I don't want to live under that surveillance.
It pisses me off that the company used spurious arguments to show that I'm no longer disabled. I'm broke. And I'm going to lose my secondary health insurance from my former employer, now that I'm no longer considered disabled and on leave. I can document that I have chronic and worsening medical conditions. I could probably win if I appealed. But do I want to put myself through the stress of appealing and if I win, put myself back under their surveillance? Do I want to live like that again? Is it worth it?
You might be asking, well, if she can walk the dog or do yoga, how could she be disabled? Disabled under my policy and most others doesn't mean that a person is bed-bound, and/or unable to do any activities. It means you can't hold down a job with set duties and hours. Without going into the specifics of the limitations caused by my medical conditions, I'll say that while I can walk the dog sometimes or do yoga sometimes, I'm not able to do the things that healthy people can do, such as know with any confidence that they will wake up in the morning and be able to go to work. Or sit in a chair, stand as long as is needed, and communicate coherently for eight hours day after day.
I tried. My symptoms started when I was in high school, that's when they were bad enough to limit what I could do each day. I had them all through college and graduate school, while I worked during all those years and raised a child. I had them after I got my PhD, when I started my job as a professor. I was finally diagnosed in 2004/2005 after twenty years of living and working with the symptoms. After diagnosis, I worked full time for another seven years and I was established in my career and well on the way to achieving some significant professional goals. I had gotten a new Program approved in my university, was working as its Director, was excited about a whole new group of innovative courses my colleagues and I were going to develop over the next few years, and I had a book that was half written. I was working on multiple grant projects. But then I crashed, after almost thirty years of living with multiple autoimmune conditions.
I've given up my professional identity and all the professional projects in education and social change that motivated me. That was and is hard. Now, I want my focus to be on living a life that's as healthy as it can be. I want to push myself when I can and rest when I need to. I want to walk when I feel well enough, write when I feel coherent enough, and interact with my doctors in a way that's best for my health. I'm thankful that we have programs such as Medicare and Social Security Disability, that I paid into them during my working years, and that they help to cover the basic necessities for living. I don't want to spend the years until legal retirement age proving again and again to my private disability company that I am still disabled with conditions I've had since I was 15 and which are incurable. I don't want to police myself as if I'm under constant surveillance every time I leave the house or go online, or manage my doctors to be sure I can get the right kind of evidence I need for my insurance company.
But.....But...I'm still wrestling with whether or not to appeal. I want to: Because their decision is wrong and because they do this to many disabled people and count on us not pursuing the matter because we're too sick. Because they make their profit off of people like me who decide not to pursue the matter. Because the law is on their side; they suffer no legal or financial consequences when they deny disabled people benefits for spurious reasons. Because the money and the medical benefits help make sure I can take care of myself now that I can no longer work--that my extremely expensive medications are covered by insurance, that I can see the specialists I need to, and that I can pay my share of living expenses.
And then there's this: Because I don't know what will happen to public programs, such as Medicare and Social Security Disability, that I and millions of others depend on for basic living expenses.
In a future post: I anticipated that my private disability insurance benefits might be cut, and made some changes in my life. What do I think of those changes now that the cut has taken place? And thinking forward from now: What if public benefits are cut for me and for others?
However, here's the rub, two rubs actually: one, putting together the materials to rebut them is extremely stressful and time consuming. I know that I could do it, given that I have 180 days to appeal, but the stress, brain fog, and fatigue it causes are not good for me [Duh, I'm disabled.]
Two, being on that insurance means that I subject myself to the threat of surveillance, both in person and online. It's legal and common for them to film claimants in anytime they're visible in public: They can park on the street and film me in my yard. They can film me walking the dog. They can film me at the grocery store or in the parking lot at my doctors. They can seek out any information about me that's online, including news articles, public Facebook posts by me and others, posts in discussion boards.
I know they can do this in general because they routinely do it to others and the courts have said it's legal. I also know that they've done it to me. As one part of the appeal process, I requested their dossier on me. It includes their communications with a surveillance company and the information this company was able to find on me. I've been careful, because I value my privacy very highly and I know that any activities can be taken out of context to support whatever case they want to make. Still, the company collected information including the fact that in the last year or two, I got married, I took photographs outside, and I stood on a beach. Damning, I know. They searched to see if I was a member of any professional groups, had any new publications, or had any other kind of public involvement. They found nothing after the date I became disabled. Previously, they had requested that I provide the url of any blogs I had; I refused to give them that because I don't think they have a right to access my non-professional writing, which includes political views and views about their company. This writing is not relevant to the question of whether I'm disabled or not.
They also tried to do in-person surveillance but were unable because they did not know where we were during that time period. This was when we were relocating to the Southwest and staying at several different temporary locations in our rv, prior to settling in the Taos area. We used a mail processing service in a different area of the country so that we'd receive our mail during this time, since we had no permanent address.
They are regularly request my medical records from all of my doctors, and provide me with forms that I have to be sure my doctors fill out. The forms ask the doctors to evaluate my disability status. The insurance company is free to call my doctors and ask them questions about me. I'm also required to get doctor notes from every one of my doctor visits, under a short deadline.
Anyway, the point is: If I appeal this denial of insurance benefits, I'm agreeing to put myself back under their surveillance. I don't want this. Living under the threat of surveillance changes the way you live, the way you experience the world.
Knowing that I'm under possible surveillance, every time I leave the house, I'm imagining how my actions will be interpreted by the insurance company. Every time I do something on the internet, I'm doing the same thing. And not only can it be recorded, it will be taken out of context and interpreted without my having the opportunity to provide any explanation.
Any interaction I have with my doctor, anything he says on the spur of the moment during a telephone conversation, or anything he or his office records in my medical record is subject to the same surveillance and mischaracterization.
Living under this surveillance is hell. It changes the way I interact with my medical care providers, the things that I do any time I step outside, and even the way I think about myself. There's the constant question in my mind: How will this look to the insurance company? Can this activity or statement be taken out of context to show that I'm not disabled?
It sows self-doubt and self-questioning and makes me feel like a fraud. Instead of behaving in a natural way and doing the things that are best for me, I'm always asking myself whether or not I'm behaving sufficiently disabled in their view. When I interact with my doctors, I'm not seeking to get the best medical care, I'm trying to be sure that I am able to get sufficient and accurate documentation of my medical condition. I 'm trying to manage the behavior of the doctor to be sure that she records the right kinds of things for the insurance company (for example, the ways in which my condition effects my activities of daily living). When I do things in public, I'm not focused on what's best for my body and what it's capable of at any given time, I'm thinking about how the action will look to the insurance company. For example, it's good for me and my doctors have advised me to engage in gentle exercise. So taking a yoga class or using a recumbent bicycle at the gym, walking the dog or walking from one store to another instead of driving, going to the farmer's market or the library---those are all good for me, but can also be filmed and taken out of context as evidence that I'm not disabled.
I don't want to live under that surveillance.
It pisses me off that the company used spurious arguments to show that I'm no longer disabled. I'm broke. And I'm going to lose my secondary health insurance from my former employer, now that I'm no longer considered disabled and on leave. I can document that I have chronic and worsening medical conditions. I could probably win if I appealed. But do I want to put myself through the stress of appealing and if I win, put myself back under their surveillance? Do I want to live like that again? Is it worth it?
You might be asking, well, if she can walk the dog or do yoga, how could she be disabled? Disabled under my policy and most others doesn't mean that a person is bed-bound, and/or unable to do any activities. It means you can't hold down a job with set duties and hours. Without going into the specifics of the limitations caused by my medical conditions, I'll say that while I can walk the dog sometimes or do yoga sometimes, I'm not able to do the things that healthy people can do, such as know with any confidence that they will wake up in the morning and be able to go to work. Or sit in a chair, stand as long as is needed, and communicate coherently for eight hours day after day.
I tried. My symptoms started when I was in high school, that's when they were bad enough to limit what I could do each day. I had them all through college and graduate school, while I worked during all those years and raised a child. I had them after I got my PhD, when I started my job as a professor. I was finally diagnosed in 2004/2005 after twenty years of living and working with the symptoms. After diagnosis, I worked full time for another seven years and I was established in my career and well on the way to achieving some significant professional goals. I had gotten a new Program approved in my university, was working as its Director, was excited about a whole new group of innovative courses my colleagues and I were going to develop over the next few years, and I had a book that was half written. I was working on multiple grant projects. But then I crashed, after almost thirty years of living with multiple autoimmune conditions.
I've given up my professional identity and all the professional projects in education and social change that motivated me. That was and is hard. Now, I want my focus to be on living a life that's as healthy as it can be. I want to push myself when I can and rest when I need to. I want to walk when I feel well enough, write when I feel coherent enough, and interact with my doctors in a way that's best for my health. I'm thankful that we have programs such as Medicare and Social Security Disability, that I paid into them during my working years, and that they help to cover the basic necessities for living. I don't want to spend the years until legal retirement age proving again and again to my private disability company that I am still disabled with conditions I've had since I was 15 and which are incurable. I don't want to police myself as if I'm under constant surveillance every time I leave the house or go online, or manage my doctors to be sure I can get the right kind of evidence I need for my insurance company.
But.....But...I'm still wrestling with whether or not to appeal. I want to: Because their decision is wrong and because they do this to many disabled people and count on us not pursuing the matter because we're too sick. Because they make their profit off of people like me who decide not to pursue the matter. Because the law is on their side; they suffer no legal or financial consequences when they deny disabled people benefits for spurious reasons. Because the money and the medical benefits help make sure I can take care of myself now that I can no longer work--that my extremely expensive medications are covered by insurance, that I can see the specialists I need to, and that I can pay my share of living expenses.
And then there's this: Because I don't know what will happen to public programs, such as Medicare and Social Security Disability, that I and millions of others depend on for basic living expenses.
In a future post: I anticipated that my private disability insurance benefits might be cut, and made some changes in my life. What do I think of those changes now that the cut has taken place? And thinking forward from now: What if public benefits are cut for me and for others?
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