A Defining Moment

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A commenter on the blog yesterday prompted today’s post. (See, if you pay attention to what is going on around you, ideas just fall into your lap)

Why do some people feel the need to define themselves by their illness?

Why would they not, like most of the rest of us I guess, define themselves by their talents, their wealth, their ability to be perfect parents, or their skill at foosball? 

Let me offer a few random things that I think might play into this. As my time to write is limited this morning I trust that all of you , my very smart and not-so-shy readers, will fill in the gaps for me and add more as you see fit in the comments today. 

I have seen a lot of people over the years in a clinic setting who have applied for and achieved disability status. That is, they have amassed a truckload of paper work, gone to be evaluated by a separate (non-treating) mental health professional, had all of this information presented to a court system or administrative law judge, and then been granted the privilege of receiving what is in fact a very small amount of money to live on each month.

They are re-evaluated periodically, usually every few years, to insure that they still meet disability requirements. These re-evals are the source of intense anxiety for some of my patients, as they figure if they have not been presenting as “sick enough” or that my paperwork reflects any amount of improvement that they will no longer receive “their check” each month. 

I have also seen this happen in other systems such as the VA, where maintenance of livelihood (that is, staying sick enough to keep getting paid for it, in essence) is predicated on continuing to have a fixed number of documented symptoms or diagnoses that make you  “service connected” at a percentage that translates into a fixed amount of monetary compensation. 

Yes, these kinds of systems encourage you not to work hard to get better, but to put a lot of effort into documenting that you are still sick enough to keep getting paid for it. 

There are those who have conditions such as hypochondriasis. They are absolutely sure that they have something wrong with them that the doctors have just not been able to find yet. They go from place to place, doctor to doctor, clinic to clinic, trying to find that one elusive diagnosis that will tie it all together. They in a sense define their lives not by a particular illness, but by the search for an illness that may or may not exist in reality.

Malingerers, on the other hand, have something that drives them to fake illnesses, manufacture them, embellish them and work then for all they’re worth. Secondary gain plays a large part in this, of course, in that illness gets one out of jury duty, court appearances, military service and long periods of idle time in jail. These folks define themselves by very specific illnesses and symptoms, carefully crafted and maintained for very specific reasons and purposes. 

Keeping oneself in the sick role can serve many purposes. 

It sanctions your disability, at least for a certain time and to a certain degree. If you’re sick, you’re not a functional member of society, and that’s okay for now. You’re expected to get better and return to being that member, of course, and that’s where it breaks down for those with hypochondriasis and those who malinger. 

It gives you the added benefits of physical, emotional, and financial help when you really need it. Again, this is good to a point. The problem is, over the years people have learned to work the system and milk it for all they can, and that’s not the way things were designed to work. 

You know how people who are abused will stay in an abusive relationship, despite horrendous emotional, physical and mental anguish and pain? Well…

When you’re sick, you learn to be sick. You get used to it, for better or for worse. You learn what that means. You learn that to get well, while considered by most of us the the desired goal, may mean giving up interactions, attention and financial security. You’re not so sure you want to, or even can, go back to working and being “normal” like everyone else you see around you.

Sometimes, the devil you know is better than the devil you don’t. 

Comments, oh wise readers of mine?

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14 thoughts on “A Defining Moment

  1. It seems like everyone has a story about someone who gets disability to avoid work-I had a next door neighbor who had been on disability for his back for years even though we would watch him climb around his roof doing repairs. They seem to all get around nine hundred dollars a month. I have seen people who try to fake the nonfakable parts of pulmonary function tests to qualify They kind of brag about how devastating and permanent their disability is.I have a drunken relative in Florida who will slur out, “They say I am” TOTALLY AND PERMANENTLY” disabled as if it was an award..You also meet chronic schizophrenics who really are unable to work or function-the best they can do is keep trying voc rehab and work with ACT type case mangers.Mabe someday a computer programs will improve the shaky system of separating the people with rehab potential, the fakers, etc. from the hopeless (there are some train wreck people who are terminal/multi organ failure, etc who should always qualify). If a person was gravely disabled from mental illness, it would be terrifying for them to think they might end up homeless or with an unsupported family because they were in and out of hospitals and unable to earn any income. Too bad there are not enough programs to ease a person back into work after getting better. Some psychiatrists around here specifically ask potential new patients if they are applying for disability and will not take them on if they are are applying..Don’t ask me to get to the point as I do not have one. I just know it is a subject we ruminate about and debate in all areas of health care.

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  2. Well, a very enlightening write up i must say.

    I appreciate your point of being defined by a certain illness, which is understandable as a human nature. We all define ourselves on the basis of our ideologies, concepts and perceptions of life and God, religion, profession, personality traits and what not. We all do it. If we see more fundamentally, we choose our identities right from our adolescence.

    But. the question is that when we define ourselves with our disabilities(which i find a very brave step to take to actually be able to appreciate it) do we drag it to an extent when we start abusing it? From the examples you quoted-Hypochindriasis and Malingering- i personally get an impression that the secondary gains in these conditions are weighed more than the idea of choosing your identity. (Precisely malingerers)

    What say?

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  3. Sorry Doc, you’re stuck with me–everyone else has taken one step back! I can’t argue with anything you’ve said. We do learn to love the familiar, no matter how repugnant it may seem at first, because we (all of us) require stasis in our daily lives, constants we can depend on, good or bad.
    When you’re chronically ill, even if improvement occurs, you’re conditioned to avoid trying to return to work because you’ll: probably cause an increase to the company health care premium because of your “pre-existing condition” (the ACA should change this mindset but that will take time); if you’re on some sort of partial assistance, it will be reduced dollar-for-dollar by any salary you earn, or perhaps eliminated altogether; if you live in subsidized housing, your rent will probably go up within a month or you’ll be asked to leave. All these things, and more, are barriers to “getting better.”
    Financially, you’ll “get worse” instead of better unless you can manage to earn a salary substantially higher than minimum wage. Few returning workers can do this out of the starting gate. In many jobs, it takes years to begin to earn a wage you can just barely live on. None of this is new. We know all this. What prevents change? Across the board, it’s that devil we don’t know–you’ll meet him quickly, and disastrously (because you have no safety net) when you’re poor and attempting to improve your lot. And thanks to John Calvin, at that point you’re on your own; you weren’t worthy of whatever it was you were trying to accomplish.
    There–some Monday Mania for you! Still enjoy reading the best blog on the Internet. Hope you’re well, and carping the Dog Days. Haven’t picked up a rocker yet, but working on it! R.

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  4. As usual, you nailed it! I really wish I did not know first hand what you are talking about. It hurts to know that someone that one has trusted has had so many “issues” that he felt/feels the need to medicate, medicate, medicate….to the point that he lost his real identity. Medication, like lots of other things, can be a double-edged sword that can cut the heart out of perhaps even more than just one person. SAD!

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  5. Hmm. I wonder if you were wanting me to comment on this, one of your professional label-making friends? Your friend who also has disease by which she is in part defined, because it is in my body.

    So yes, I think about the issue of labeling a great deal and I thought a lot about your question while I was walking this morning. Then I had to work. Now it is lunch so I will spill my musings. Next time though, I want a guest post. 😉

    Why people label themselves according to their disease?

    1) Language-wise, it is much easier.
    “I am diabetic” is more economical than “I have diabetes.” It’s only a few letters but it makes a difference. Believe me, this is why I was called, “Liz” for the first 19 years of my life. My teachers didn’t want to take the time to add the other six letters. And in spoken language, the three syllable savings was worth it to them.

    Or, here’s a popular one in my field, “aggressive child” vs. “child with aggressive behavior problems.” Or more therapeutically phrased, “child who has not yet mastered alternatives to aggression in order to solve problems”.

    Or “I am impulsive” vs. “I have impulse control problems.” Or more accurately, “I have trouble with consistent emotional and behavioral regulation, which produces impulsive behavior.”

    2) Thinking-wise, it is much easier. Black and white thinking is easier in the short run. Life is complex. People are complex. I am often encountered by very intelligent and well educated parents. They are worried about their children and the worry pulls for black and white thinking. These are the parents that want to know the one reason why their child is challenging. Truthfully, I can’t give them a single reason, even if I give a single diagnosis. The child is not the diagnosis but the disorder is part of them.

    3) Lesser of two evils. “I am ADHD” is a much better self-statement than “I am bad”, “I am lazy”, “I am a loser”, and “I am dumb.” I frequently see older teens who have been told and have told themselves some pretty nasty things. I’ve had teen boys who almost never express sadness, immediately start crying at the end of a testing session when I tell them, “I haven’t scored and reviewed everything yet. I don’t know exactly why you are having so much trouble in school. A lot of the kids I see have been told that they are lazy even by people who love them. But what I can tell you is that you are not lazy. You are a hard worker.”

    4) Some disorders are pervasive and chronic. If a disease impacts you in your relationships, at school, and in your job and further, has been impacting you on a chronic basis for many years, you might define yourself according to the name of your disease.

    5) Stigma. That’s an easy one. Having a disorder, especially a mental disorder, makes people less than human. They are defined by their disease by others and then for whatever combination of factors, the person with the disease follows this definition.

    Finally, as far as secondary gain, it is not uncommon for all of us, even those without diseases to use labels in a way that serves us in the short term. I think of how many times that I have said, “I am busy’, “I am overworked” in response to demands from my husband or family. Or even as excuses for not exercising or taking care of myself. Or even as a way to convince myself that I am so important and useful that self-care is a low priority.

    We are all label-makers.

    -E

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  6. OMG Dr. Smith! You’re spot on, but it’s not just about the patient (real or imagined). This situation is
    extremely hard on the partner and family of such a patient. The “sick-and-in-pain” patient demands attention,
    sucks all the air out of the room, it’s all about him. Eventually in spite of loving the person, respect is eroded, restrictions (imposed by his condition) are
    resented, limitations become costly. You have such a good understanding of the trade-offs for the patient,
    but all the freebies and attention do not come without a price. The family pays dearly, the spouse must
    decide if it’s worth it or not — there are trade-offs in everything, as you indicated so well.
    Thanks for another beautifully written and insightful post.

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  7. lysha,

    You make a subtle but important point, if I understand you correctly.

    Some patients make a conscious choice to “choose an identity” in that they choose to act in a way that gets them something such as attention, medications that they are addicted to, or maintenance of disability status.

    For others, I think it is much more subtle and even unconscious, in that they act in a way that they don’t even think about, but that certainly drives itself by the rewards it generates.

    Greg

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  8. Liz (I need to save time this morning)

    Thank you for that wonderful and very thoughtful comment on this post. It certainly could have stood alone with no problem whatsoever.

    Greg

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  9. Sherrie,

    Thanks for your reply.

    I certainly did not want to exclude families and spouses and caregivers and others from the mix, but just did not have the space or time to include them on that particular post!

    Thanks for making this excellent point, and thanks for reading. Please come back, read, and comment again!

    Greg

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  10. Often times I think people cling to labels because it’s the path of least resistance. If they define themselves by their disease they never have to challenge themselves to exceed their (sometimes self-imposed) limitations. They become their limits.

    I say “they” but I suppose I really mean me. I shy away from support groups for this very reason – many of the support groups I’ve been to have been more pity parties than support – almost a battle of who is more sick, who has more issues and why they can’t change any of them. I no longer am willing to be defined or limited by illness.

    Though provoking post as usual. I really enjoy your blog.

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  11. You are very welcome. And I thank you for your gracious and gentlemanly compliment, given that I demanded a guest post in the future and I trashed talked you about “writing your post for you.” Further, I suspect that your Spidey Sense may have told you that your last two posts were not entirely comfortable for me. (You will always be da bomb, though, in terms of my respect for your mental health provider excellence.)

    I actually think this would make for an interesting joint post some day…

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  12. Ha, yes it does.I kind of took the disability issue and ran with it when your topic was taking on a sick identity. I think I meant that if you go on disability in particular, your diagnosis engulfs you and takes on a life of it’s own. You put so much time, effort, paperwork, even legal help into gaining your disabilty-qualifying diagnosis that you would become a CHFer or a quadraplecic first and foremost. The diagnosis is even the source of your income and several experts have had to define you.

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