Tuesday, May 31, 2011

Disease Identity

Alright. I'll admit it. I hate this article: You Are Not Your Disease

To summarize, the first example is a child cancer patient who complains that he's hurting, and the adult finally figured out its heart-hurting, not pain hurting. The adult counsels the child who is eventually able to "[hold] his illness and pain in the container of his whole life rather than allow the illness to become the container for everything he thought, felt and did."

The second example is a woman with Lupus who,"She lived every day of her illness in its context and so lost touch with everything that made her laugh, brought her pleasure or had always had meaning to her."

The last example is a guy who uses denial while asymptomatic with Hepatitis C, and the author concludes: "He gave his power over to his disease by being unwilling to embrace the truth. He let himself become really sick before he finally faced the truth."

Now, I don't blame the author for this type of thinking. It's pervasive in the health community. I've been told, "You are not your disease, " and I wanted to respond, "Really?? Because I thought I introduced myself by my name. I'm pretty sure I didn't walk into your office going 'Hi, I'm autoimmune hypophysitis with recalcitrant migraines.'" *eye roll* Still, this article is teeming with flaws...

First, in the case of the boy with cancer, symptoms are described by the author as "periodic swollen glands, sleepiness, and aching" and that "the day he went for tests Stephen was symptom free, in fact he had played baseball all morning." The author then goes on to explain that he starts acting sick only once he's gotten his cancer diagnosis. He would complain of his symptoms before, but they weren't overwhelming until he knew they were from cancer. But then when reminded that his life hasn't fallen apart simply because of a diagnosis, he's able to bounce back. Well, duh.

Second, there's the obvious bias that the boy is the author's son. He is also the one she uses as an example of one who got it "right." That just doesn't pass the giggle test for me.

Third, we're also talking about a kid with a mom who takes care of all the management parts of her child's disease, where as the kid only has to worry about getting better. The kid isn't sitting there alone with their disease.

Not a fair comparison to either of the other cases AT ALL.

Just comparing the Lupus case with the Hep C case, the guy with Hep C didn't address his disease until it started causing problem in daily living. I'm not surprised. He then got on the transplant list, got a new liver, and got happier. Again... duh.

Lupus is pretty nasty when it comes to symptoms: your immune system starts attacking the organs in your body causing widespread chronic pain, slowly killing you. It is degenerative with no cure and the treatments can be as nasty as the disease (chemo, steroids). In cancer case, the symptoms of the disease weren't even disabling. I'm sure chemo was no picnic, but for cancer that's a temporary state... not chronic. And somehow it's the woman's fault that she can't get over something she cant' get over? How does that make sense?

So... Why don't we put this into context and take a look at how normal people identify, and then see if we chronically ill people are really acting so awfully.

"Everybody has a sense of self or sense of personal identity. In fact most people have a number of important ways of thinking about themselves that are significant enough to be considered multiple senses of self. Our sense of self includes those roles, attributes, behaviors, and associations that we consider most important about ourselves. These sense-of-self associations can be based on any combination of the following
Occupations (e.g., teacher, physician, plumber)
Social relationships (e.g., husband/wife, friend, colleague)
Familial relationships (e.g., brother/sister; son/daughter; mother/father)
Quasi-occupations (e.g., helper, volunteer)
Avocations (e.g., athlete, musician, artist, collector, helper, volunteer)
Affiliations (e.g., Shriner, Yankee fan)
Abilities/disabilities (e.g., smart person, funny person, shy person with a disability, “patient”)
Salient attributes (e.g., reliable, hard working, good looking, lazy, dishonest)
Spirituality (e.g., child of God, Catholic, Buddist)"
Tutorial: Sense Of Self / Personal Identity

What happens when a person gets chronically ill with a disease that actually disables them? Occupation is generally lost. Social relationships can completely disappear at worst, and become severely limited at best. Loss of occupation compounds this by taking away not only the social workplace, but also in limiting funds for other social activities. Family relationships become strained as old routines are disrupted and replaced with new demands of the illness. Quasi-occupations go away as managing doctors and symptoms becomes its own full-time job. Avocations go away our are severely limited. Affiliations, based on their nature, follow the same trend. Abilities are taken or drastically changed. (And hey... look! This author doesn't immediately assume that being a person with disabilities is automatically a negative thing. Holy cow! [/sarcasm]) Salient attributes all go into flux as the disease forces certain attributes (I feel like I'm being lazy, but I know I can't stand on my feet for more than 10 minutes to clean.) And Spirituality? Well, a crisis of faith is not unusual when everything you believed about the world has changed.

A friend of mine in Seattle got stage 4 liver cancer. That's a death sentence. It didn't cause him any pain, but the sheer enormity of the situation meant that he wanted to be able to talk to his friends about how he was feeling and what he was going through. It got to a point, however, where all the healthy people started to complain about *him* and started calling him "Cancer Boy" behind his back and avoiding his company. This was from established, working professionals in there 30s... not school kids.

There's this endemic idea that people should just accept their reality and quit their complaining. But on the other hand, we also teach that the only way to enact any change is to protest is and make things happen. When it comes to a chronic illness, however, there seems to be this social taboo. The only conclusion I can come to is because it isn't a shared experience, people assume a) it can't be that bad (different information) b) it can't be that bad (you just don't know how to handle it) and c) it can't be that bad (you must trying to get something from me). It's the same Wrongology pattern that most people follow with any given situation. I know from my own experience I had no clue until it became a twenty-four hour, seven days a week problem for me.

I am a diseased person. Dis-eased. Without ease. My life ain't easy.

Do I want people to feel sorry for me? Absolutely not. But in order to function in society, I need the people around me to understand that I'm working under certain constraints. It's it fair? No. Do people around me sometimes not understand? You bet. And that becomes it's own problem when they get upset because I can't... whatever. I get perceived as being obstinate, lazy, self-centered, selfish... I'm NONE of those things. My disease is. It's uncompromising. But I'm the one who has to take both the blame and responsibility for it.

I'm not the same person as I was pre-sick. I can't even *be* that person. There is so little that I'm physically capable of doing, or doing safely, that the me who I was cannot be expressed anymore. When I go to look for me, I see all the bits of me now smothered and/or dead because I got sick.

I am my disease, Always. Every day. I am the face, the body, the manifestation of it. My disease not just something I carry with me, it's something that has invaded every aspect of my life. It makes a number of my decision for me, frequently in a direction I don't like. I'm actually forced to act in ways that are against my values because of my disease. That's a hell of a thing to have to reconcile with oneself. Who I have to be now is not who I want to be. Who I have to be is professional patient. Sure isn't what I dreamed of becoming as a little kid. But it is my reality. It is how I have to live my life. It is how I move through every hour of every day. It's not a job I get nights and weekends free from to devote myself to other pursuits... No... it pretty much my sole pursuit so much so that... well, you're here aren't you?

But if I were a doctor dedicating their life to this disease and talking about it constantly? Whole different story, right?

So maybe, just maybe, being my disease isn't necessarily a bad thing, now, huh? Maybe all this research and identifying and talking about it is actually helping other people just like me (it has). Maybe all that "obsessing" is helping me be on the cutting edge of treatment and access to care (it has). And here this author blames the patient for "her tireless search for answers." The author fails to see what they wrote themselves and makes that dedication a negative thing just because it was a personal struggle.

And that's what I see is the great irony of it all. We pat people on the back for their ARMSTRONG bands or for displaying their colored ribbon "in support." It's all good and well when you're advocating for someone else's struggle with a disease.

Advocate for yourself? Get labeled as selfish and attention-whoring...Cancer Boy.

But what really strikes me is why am I taking identity advice from someone who can't have any concept of what I'm going through anyway?!?! That's like trying to take sex advice from a virgin.

I think what I don't like most about the whole "you are not your disease" thing is that it devalues all the work I do for my disease. It doesn't allow me to take credit for all the time I have to put in. It turns that time into ruminating and obsessing, which isn't true when I get positive payoffs from it.

I have a teddy bear that is as old as I am. His ears are just loops of fabric, his eyes are sewn on (and one very poorly). He looks like a zombie. But that's *my* teddy bear and I love him. I'm not about to throw him out just because he's threadbare and scary-looking. He's earned every one of those rips & tears surviving attacks from little sisters and German shepherds. The bells that were in his ears wore holes through, but one survives, tied to a tiny sweater my mother knit for him. His name is Twoey, because I was two and wanted two of everything. Wonderful child silliness. To me, he's an absolute comfort and joy.

There's no shame in me identifying as a patient, unless I let other people say so. I can take pride in the effort with which I approach my disease. I am my disease, but that's okay. I can find a way to make peace with it. I can find a new identity that I can find value in that incorporates my disease. I can be professional patient--that is, I can approach my disease with the same consideration, ethics and skill that I approached my professional employment. It may not be the me I want, but it can be a diseased me I can love anyway. 

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