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. 

Monday, May 30, 2011

"If I knew what I was doing, I'd be doing it right now..."

I'm not generally a fan of country music, but Keith Urban's I'm In is a pretty awesome song. There's a similar sentiment in a Calvin and Hobbs strip that goes something like, "If I knew adults were making it up as they went along, I wouldn't have been in such a rush to grow up..."

I got hit in the head with a door today. I'm fine. In fact, I saw it out of the corner of my eyer and went, "That's odd... the door shouldn't be there..." *THUD* Let's hear it for hollow-core doors! And my reaction was surprisingly... not. I did a quick check... yeah, didn't even hurt. I mean, it hurt in the moment, but the pain was already gone. No reason to do anything except laugh and put the door up better next time. Then I noticed the hook in the back of the door and thanked my lucky stars I didn't try and save myself. I probably would be reporting from the ER on how I impaled my hand! *laugh* All's well that ends well...

I thought I put the door up right. I mean, sure, it's not on it's hinges, but I had it leaned up at a far enough angle. Or so I thought.

I'm glad I laughed at myself. I could have very easily gotten angry, or self-depreciating, or something similarly non-productive. Because we're taught from a very early age (through out school systems) that being "correct" means that you're "smart, responsible, virtuous... safe." In our culture, "to be wrong, means there's something wrong with us." Kathryn Schulz's On Being Wrong is a marvelous talk:

To paraphrase one part (if you don't have the 18 minutes), when our beliefs on how the world is doesn't match with someone else's view, we generally fall into a bad pattern. First, we assume the other person is ignorant. They don't have the facts we do, and if we just bestowed those facts to them they'd come to our side. If we find out they have the same facts, we next assume they're idiots. They just can't put the puzzle pieces together. But if they're also pretty smart, well, then we assume they're twisting the facts for their own malevolent purposes. We're so concerned with not being wrong ourselves, that we start to assume the worst in people.

I've found, through my own experience, that people can be their most compassionate when we allow humanness in ourselves. Yeah, being right is great, but not having to worry about some pedestal I "want" to be on means a lot fewer knocks on the head! (In spire of the occasional wayward door...)

When I stop worrying about getting the right answer, I find I give myself more time to look at the situation and make sure what I'm seeing is really what I'm seeing. This has proven most useful in my relationships with other people, but has has proven to be gold in my relationship with myself.


Saturday, May 28, 2011

Be kind, for everyone you meet is fighting a terrible battle...

This man beside us also has a hard fight with an unfavouring world, with strong temptations, with doubts and fears, with wounds of the past which have skinned over, but which smart when they are touched. It is a fact, however surprising. And when this occurs to us we are moved to deal kindly with him, to bid him be of good cheer, to let him understand that we are also fighting a battle; we are bound not to irritate him, nor press hardly upon him nor help his lower self.
-John Watson

I have what I call my "Blue Meanie Days," in reference (and reverence) to The Yellow Submarine. The Blue Meanies were these awful cackling creatures that went around sucking the joy and happiness out of everything turning a technicolor world gray. As both a symptom of my migraines, and a symptom of chronic illness, I get Blue Meanie Days. All these nasty thoughts come creeping up on me about how awful I am, how my life is nothing but problems, that I'm getting nowhere, that I have no options, yadda...

A great counselor I had in Seattle explained some of the brain science to me. The way the brain builds memories is that is associates certian "flags" to events. They can be flags that help us remember how to gain rewards, how to avoid consequence, how to respond to similar situations. It's how we learn. So when we're feeling bad, whether physically, emotionally, spiritually, whatever... the brain will immediately start bringing up everything else associated with that feeling. It can feel like our brains are out to get us! "Hey, while you're feeling terrible, let's bring up every other time you've ever felt terrible and take a skip down memory dark alley... try to get mugged. It'll be fun!"

What our brains are actually doing is a form of problem solving. The memory manager is flipping through every other time we felt like this, examining every event in detail like a detective,  to see just how the hell we got out the last time!!! The problem is, this "memory mugging" can be totally counter-productive. Maybe time was what it took to get out the last time. Perhaps these are all situations that continue to baffle us. What then? I've come up with five ways of dealing with this.

1. Denial. It Ain't Just a River in Egypt...

Okay, okay... I can hear all my 12-step friends *screaming* at me, but let me explain. I believe in accepting reality.

Let's say I'm driving in traffic. I'm in a hurry because I'm late to an appiontment. The car in front of me slams on its breaks. I don't want traffic to stop. I don't like that traffic has stopped. But you better bet I'm gonna accept reality and slam on the breaks in order ot not wreck!

The type of denial I'm talking about is this: I know that my Blue Meanie Days are unnatural. It's a place my brain goes because it's being attacked. That would make me grumpy too! But I don't have to listen to it. I don't have to believe the Blue Meanies. I can check for a moment to see if my ruminating is constructive (because sometimes there are lights of insight in dark places). But if the stewing isn't helping, or if it's a broken record I've heard before, I'll just tell those Blue Meanies to shut up.

Sometimes, too, all my tactics fail me and I just have to wait the whole thing out. Some temporary escapism can be and absolute survival tool. I just can't allow myself to use it to escape responsibility. ;)

2. Finding Lights in Dark Places...

My writing happens during my more painful days. The most painful days, and I couldn't stand to be in front of a computer! But if I'm in agony and I want to keep from just wallowing in misery, I'll sit down and write in the "no whining" zone. I force myself to talk through it as if you all were sitting in pain in front of me. Telling you how much it sucks is redundant. That gets you and me nowhere new. Sharing what's gotten me this far... well, now that could actually be useful.

And when I can be useful because I got sick, not just despite the fact I got sick? YES! Then the darkness turns to light.

3. Therapy...

I'm pretty good at beating myself up. I know just were my soft spots are, just where to land those sucker-punches. And I fight dirty with myself. Real bare-knuckles, take it to the mattress mean... And I was tired of it. So I took it to that great counselor in Seattle.

When I would beat myself up, it was usually in the guise of some authority I had at the time:: my mother, my maternal grandmother, that one high school teacher that scared the crap out of me. And they had their favorite familiar phrases... "You dummy!" said with a particular inflection that can make you feel lower than worms.

But what I learned was this. I was trying to pysch myself out! I was using the memory of that authority figure and what they said and the way they said it because inside I was terrified of screwing up and I was trying to protect myself. And I wasn't being kind, gentle, or forgiving with myself when I did screw up.

My counselor and I wrote a script so I could face those voices down when they came up:

Thank you for sharing. I understand that you are trying to protect me. But this is not helpful right now. I know that I'm scared, but I need to be calm and clear headed right now. Thank you for understanding.

And I was able to break the cycle of behavior in what felt like no time.

4. Get a New Perspective...

Now, this one took me YEARS to figure out and I couldn't believe I'd missed it all that time.

Sometimes, I can spend so much effort and hours in problem-solving that soon, the only thing I'm looking at is problems. Not that I'm actually surround by them. Not that I'm imagining problems everywhere. What's happening is problems of success.

I'll fix a problem, and then instead of stopping to celebrate and relax, I'm on to the next one. I'm jumping hurdle after hurdle like some track star, and pretty soon I feel like I'm going in circles! But that's an illusion....

It's like rock climbing. You can be so focused on this foothold or that handhold or making it to the next rest spot that you completely forget where you are and how far you've come. So when a moment comes that I actually remember to stop and look around.... Holy COW! Now that's a view...

I may be encountering problem after problem, but that's because I keep clearing problems away. I keep succeeding: I make progress. It's not always perfect, but it's progress.

5. Get a New Prescription... (Responsibly)

I use a medications to replace the hormones I don't produce. I see no problem in taking a medication for the neurotransmitters my brain has difficulty keeping around.

Have I had some scary experiences with 'head meds'? You betcha. But I've also had some surprisingly good experiences too. My only suggestion is not to have contempt prior to investigation.

And when someone asks me how I'm doing on my bad days, I always answer: "Hanging in there." It's honest, and I don't have to make them any the wiser to the battle I'm actually going through if I or they don't want to.


Friday, May 27, 2011

Chronic Illness Patient Etiquette 101

Our society has this sort of fairy-tale notion of doctors... kinda Norman Rockwell. It's a good thing--we want to believe the best. We want to believe that when we get injured or sick, we're going to be met with compassionate, concerned, informed professionals who will do everything in their power to make us whole again.

The reality is a lot worse... for everyone. Most heath professionals are stressed out, dealing with a nightmare bureaucracy, outrageous hours (unless they're absolute 'rocks stars'), and the general problems that come with personalities in business (not to mention any personal life problems that may crop up). Most ERs are crowded, underfunded/understaffed for their actual peak caseload, and they have to deal with everyone including violent crimes and people looking to exploit the system.

It's really easy as a patient with a chronic illness to fall between the cracks. It's difficult to get listened to because there's no "I fixed it!" reward at the end. We all have our limits, but as patients we don't have the luxury of calling a time-out when out limits are hit. And like the above, we scream.

Unfortunately, like the psychology behind yelling "Fire!" to get attention instead of "Rape!", screaming (unless there's obvious visual trauma) rarely gets us anywhere. Here are some tips I've collected that may be able to help you with your relationship with your health professionals. Much of the time I will assume you're working with a (and use the word) doctor, but the same applies to nurses, physician assistants, phlebotomists (the folks that take your blood), etc.

1. Remember you are a supplicant... be gracious; do not demand. 

Even though it may seem like doctors are service providers, remember, they're not taught that way. MD means "Minor Deity" in the professional world. They're used to other adults looking at them with awe: "You're a doctor? How wonderful! What do you do?" They are the magicians and alchemists who raise their hands, proclaim their wisdom, and good, simple people leave their sight healed and grateful. Other health professionals, it's the same way. It's glamorous to be a health provider. They're gonna expect that. Just roll with it.

Truth is, they'd love to wave a magic wand and make us all better too. That's just not reality. Do your doctor the favor of acting as if it's possible for them to. They're caught in a professional culture that requires them to maintain a certain level of "face". Failing a patient can imply (to themselves, to others, subconsciously, whatever) that they are a failure... even if it's just natural human limits we've hit. They're people who want to believe the best in themselves and their abilities too, so it's no fun for anyone when a dead-end is hit. A good attitude can make all the difference as to how your doctor deals with the bad news themselves.

2.  Asking always goes a long way. 

If you're like me and like a lot of information, that's fine, but don't just bombard them with questions. Yeah, they're experts, but they're not Google or Wikipedia. Sometimes, they actually have to ... *gasp* ...look stuff up! That's just good doctoring. Yeah, they were taught and passed their exams. But it's better to make sure their head knowledge matches the book knowledge. Kinda like in construction: measure twice, cut once.

3. Be polite and courteous to staff, ALWAYS.

Maintaining a humble attitude can be tough if you run into staff in a bad mood or on a power trip. My experience has taught me always go the path of least resistance.

If you run into a cranky receptionist, you can try sympathizing, "Rough day?" Hopefully this will get them to take a breath and remember not to take out their bad day on you. If this gets your head bitten off (it's happened to me), apologize! "I'm sorry, I just don't want to be a burden if you're having a rough day." That may not work either, but attempting to help them save face is often a good fall-back.

If you run into a communication merry-go-round, work on the assumption that you're misunderstanding the situation. Admit confusion to the first human being you can reach in the chain. Explain what you're trying to do and ask if that's the correct way. You may be correct. You may have been right all along. Swallow that frustration. Yes, their mistakes may directly impact our quality of life. But we want them to be willing to admit their mistakes when they make them. We want them on our side. We can't come after them with a stick of righteous anger. So, like Abraham Lincoln said about Dixie, "Let 'em up easy, boys..."

3. Dress professionally for all interactions with health professionals.

In an absolute crisis (bleeding, breathing, beating (heart)) this won't matter. But if you don't fall in a top category, even if you have to schedule an afternoon appointment and take all morning to look "good", do it. It gives the impression your'e trying to maintain the status quo despite your circumstance. Looking haggard just reminds them of that guy begging for change they tried to ignore on the way into work.

4. Don't complain... 

Complaining is easy. Whining is easy. What's more difficult is the calm statement in the above picture. But that's what we've got to aim for. Be honest and state your emotions, rather than displaying them. It may be an absolute crisis for you because you're living in a daily hell, but they can't see that. In this case, I've found that humor goes a long way. One tool I love is Hyperbole and a Half's Revised Pain Scale (not safe for work language, but worth the click). Doctors see the really scary health stuff, so it can be easy for them to minimize and assume a patient is exaggerating. The H&1/2 Revised Pain Scale lets you communicate to your doctor in that fuzzy area of "my pain is not effing around" to just below "I am actively being mauled by a bear".

You may want to know what to do should the current line of treatment not work. Let your doctor know you want to be able to raise his awareness to a potential issue before it becomes a crisis, and that you want to know how to do that through the proper channels. Instead of "yeah, but what if...?", prepare your doctor with something along the lines of: "Now, to help me stay calm about all this, I'd like to know when I should come back to you if the results aren't what we hope? When should I raise my hand and ask for more help if it's before our next appointment?"

It's okay to write out questions to get the wording just right and take them to your appointment. However this can look intimidating to a doctor too, as though their on trial. You can defuse this by saying something along the lines of, "I brought a cheat sheet so I can keep focused." A lot of doctors are having to see patients in shorter appointments. Letting your doctor know you want to be organized not only looks good as a patient, but is favor you're doing for them as well.

5. Expect them to want to treat the psychological aspects of your disease, too.

We know from studies observing soldiers on the front lines that there is no such thing as becoming "battle hardened". There is going to be a psychological toll on us in dealing with a chronic illness. This can hamper our ability to heal even if the correct treatment protocol is being used. Fatigue, stress, and other unavoidable consequences of a chronic illness becomes it's own problem. It's important that psychological health be a part of our overall health plans. That may or may not mean long term. That may or may not mean medication. It's wise to include talk therapy, in my experience. (That's a place where it's okay to complain and be emotional.)

If your doctor knows that your psychological health is being addressed, then they can spend their time focusing on your physical health.

Caveat: There is, unfortunately, a pervasive culture in medicine that will try and attribute all symptoms as a psychological problem and ignore any underlying physical problems that may be going on. If you run into one of these, vote with your feet.

6. Obey your doctor's treatment plan...

Doctors have to have discipline to go to those 8am classes as 18 and 19 year olds. It's part of the pre-med course design to weed out kids who "don't really want it bad enough" to meet rigorous the demands of a real doctor. As a result, doctors think compliance is easy. After all, they're not asking you to go through med school!

If you run in to a problem adhering to your treatment protocol for whatever reason:
  1. Call your doctor. 
  2. Get an actual person on the phone.
  3. Have them make a note in your file that you've run into a compliance problem.
  4. Tell them what's happening in a non-blaming way: "When I do this, like the doctor asked, this is the undesired result."
  5. Ask what you should do.
You may run into a rare side effect with a medication that the doctor or their staff is unaware of. In this case, it may be useful to call your pharmacist. They may be able to serve as an advocate talking to your doctor's office for you in a pinch.

7. Don't over-use after-hours services.

Going to after-hour services like urgent care and the ER can look like breaking protocol if done too often. This can be a catch-22. You may have a condition that creates after-hours crisis despite best efforts. If you have a feeling you're going to need after-hours services, best raise that possibility ahead of time at an appointment. Ask your doctor what they would like you to do should something arise where you feel you need to be seen. Have your doctor assign you an urgent care facility and/or ER that's convenient to you. Let your doctor know you will use them exclusively, barring things like car accidents or a crisis while on vacation.

See if your doctor is willing to write the a letter to the urgent care/ER to explain the coordination of care. This will let your doctor know that you are pro-actively trying to be open and honest with them. Urgent care and ER instructions always include: "follow up with your regular doctor". So even if you do have this kind of reporting set up, check in with the office to let them know you had to use after hours services and why. Usually this can be done with a voice mail.

7. Beware professional narcissism.

Sometimes, you may know absolutely what's going wrong with you. Try to tell a doctor that, and suddenly that answer is impossible just because the doctor didn't think it up.... In that case, again, vote with your feet. Trying to correct this type of limited thinking will only get us labeled as "problem patients" and "non-compliant". It's always better to just be polite, say "thank you very much" and be on your way. There's the potential that this can end up looking like "doctor shopping", but that's a risk we sometimes have to take. If we're compliant in the other areas of our care, however, we can generally find a doctor who understands a good one is hard to find.

Good luck!

Wednesday, May 25, 2011

The Wisdom of My Grandmother

When my grandmother's friends started turning 60, she griped, "they've all turned into such babies! Whining all the time..." and then she stopped her self. "Wait... I've had 30 years to get used to what is just starting to hammer them now." And she gave them a lot more grace and patience after that.

Modern society doesn't get being sick, let alone chronic illness. There are over the counter medications to make sure you don't lose a day's productivity at work, or miss a day of school. There are health supplements you can take if you're healthy to keep from getting sick from all those contagious people who are "toughing it out". There are vaccines for the flu, pneumonia... Those magic legs they featured on Glee are even real. We're living in the age of miracle science, right??

I'm gonna let my geek colors fly and quote the Princess Bride on this one: "Life is pain, Highness. Anyone who says differently is selling something." 

I hate to let my youthful idealism die, but man... if it isn't a medication they're trying to sell or trying to get some research grant or something... if there isn't money involved for someone somewhere, don't expet to find altruism in it's place.

I have to remember when dealing with 'normies', that they've been sold on this marketing campaign that there's a pill or treatment for damn near everything, with the implication that they all work. Or if not, there's always some miraculous technology right around the corner, with the implication that everyone who needs one will get one regardless of cost. Or that there are social programs that take care of these needs these poor, suffering people have (never mind that in reality it's largely rationed, sub-standard care).
I came in the ring like a dog on a chain
And found out the underbelly's sicker than it seems.
And it gets ugly, but it can get worse...
-Linkin Park, Empty Spaces

It's at this point I've got to sigh, take a deep breath, and understand they are virgins trying to explain how to handle sex... They mean well, because they want to be helpful and informative, but frankly, they're talking out their derrière. Once time catches up with them and they start facing similar problems, they'll get it.
It's not the mistakes that matter, it's our recovery from them that counts.
-Deng Xiaoping
No matter what happens, it's dealing with what has happened that's important. The fact that it has happened is done. It may be a mistake of my biology through no fault of my own. It may be a mistake that I made that landed me in a world of mess. Doesn't matter. How I deal with any situation is what's important. I don't have to be perfect. I don't even have to be graceful. And sometimes, giving myself some breathing room of doing nothing but daily coping is part of that recovery. Giving in for a while doesn't mean giving up.

I have found that being able to grip to people who know where I'm coming from really helps. One awesome set of message boards is available at butyoudontlooksick.com. There's a lot of support there from people who really understand. And The Spoon Theory is just awesome.

Good luck.

Sunday, May 22, 2011

Where online "happy thinking" falls short...

First, let me introduce you to this internet gem... (edited for work-safe content)

A 23-year old medical student makes lists of all the tasks that he must accomplish each day. He spends hours studying and refuses to go out with his colleagues even when there are no tests on the immediate horizon, preferring to spend his time looking at specimens in the laboratory. He keeps meticulous notes during all his classes and prefers to attend every lecture, not trusting his colleagues to take notes for him. He is doing well in school and has a girlfriend who is also a medical student. Which of the following disorders does this student most likely have?
B. Obsessive-compulsive personality disorder
C. Obsessive-compulsive traits
D. Schizoid personality disorder
E. Paranoid personality disorder
[and written in] F. F*** you, that sounds totally normal. A**hole.

[Full article: http://www.globalnerdy.com/2011/05/04/thats-not-ocd-youre-just-a-slacker/]

Now, let's look at this little gem picked up from a site offering professional services (yes, for money) for coping with chronic pain ...

Catastrophic thinking involves magnifying a negative situation so that it seems more negative than it is, worrying and ruminating about it, and holding pessimistic beliefs about the future. It makes coping with pain more difficult.  Here are some examples:

“My back is killing me.” (magnification)
“I can’t stop worrying about what my headaches might mean.” (worry and rumination)
“No treatments will ever help me.” (pessimism)
“My life is ruined because of my pain.” (magnification)
“I spend most of my time thinking about my pain.” (worry and rumination)
“I’ll never get better.” (pessimism)
Catastrophic thoughts don't help you cope with the pain.

*rolls eyes* Here's my take on the above:

My disease is killing me. I carry an emergency shot and wear a medic alert in case it tries to suddenly, which it has. Ain't a magnification if it's true. And I have to remember how fragile I am so I can act with the appropriate care. That's just responsible.

If I stopped "worrying" about what my headaches might have meant, I'd be dead now, thanks. I'm going to continue to "worry" about my symptoms, because symptoms mean there's something wrong, a**hole! (to steal from the line above...)

No treatment is possible right now. That's not pessimism, that's just a fact. Soon as that changes, I'll do a dance of joy, but until then, I've got to live with reality... not "someday."

My life has been ruined because of my pain. My career? Over. Finances? FUBAR. Credit score? Ha! Having progeny? Not possible. Scars? Lots. Irreparable damage to my body? You bet. That life? Gone. I will never be the same. Again, not a magnification if it's true.

I do spend most of the time thinking about my pain. But that's because I'm usually IN pain. I use denial as much as possible, but I can only do so much of that safely. And there are other responsible reasons to think about it even when I'm not in pain. Worry and rumination aren't inherently bad things!

I'll never get better. This is both true and not true. I'm not going to get better but I can live better. This is a degenerative disease. The only thing I can reasonably hope for is better management of my symptoms. But it's like throwing a wet blanket over a radio: sure it muffles the sound, but the problem is still broadcasting loud and clear. That's realism, not pessimism.


The problem with these well-meaning sites is that there are going to be people, like me, who look at that list and think they're failing somehow because they can't get to these so-called benchmarks of psychological health. But it's not a failing of ours... it's a no-win situation imposed by our disease. 

So let's try rewriting that list a bit more positive-realistically...

My disease is killing me, but it's been losing so far! Ha!

My symptoms may mean something important. I will trust my intuition and work with my health providers to create a constructive plan in addressing them. 

No treatment may ever help me, but I can keep an open mind and give new ideas a chance to work. Even if no treatment ever does help me, I can say that I tried and find other constructive things to do with my life in the meantime.

My old life was ruined by my pain. So I'm making a new life that thrives despite the pain.

I may spend most of my time thinking about my pain, but I make sure that it is within reason. If it is to prepare for, manage, prevent or resolve my pain, that's responsible thinking. If it's to look for new opportunities or advancements in pain treatment, that's okay. But I will make sure I also have information on current events so I can keep up with polite dinner conversation.

I'll never get better, but I don't have to. I can do the best with what I've got left and...

Make This Look Awesome.

I lived for years without hope. Hope can be a liability when dealing with a chronic illness. I got tired of hoping this next drug would work only to be disappointed time and time again. My heart would break each and every time the treatment failed. It became too much.

So I said, "Screw hope. I don't need it. I don't have to believe in these pills to make them work. It's not like in Peter Pan where I need happy thoughts to be able to fly. All I need is tenacity. All I need to do is not give up."

And the strangest thing happened... I improved my situation anyway. No hope or happy thoughts required.

There's a story from WWII about the allied forces hearing that the Germans were taking no prisoners; they were just slaughtering everyone. The Germans believed this would have a demoralizing effect: taking all hope away. What soldier would want to fight if it was certain they were going to die? Why fight when there's no hope of a tomorrow?

It had the exact reverse effect. When the allies figured there was no way out, the muscled up. The Germans aren't taking survivors? Well, let's take out as many as we can because that's the best we can do. They fought like tigers.

I say, so what if the situation is hopeless? That just makes me standing up to it that much more awesome. Yeah, this disease is big, scary, and frequently totally overpowering. It sucks. It's unfair. It's only gonna get worse before it kills me. So what? No one gets out of this life alive... but I can face it with dignity until then.

"Our arrows will be so numerous they will block out the sun." - Persian emissary
"So much the better...then we shall fight our battle in the shade." - Dienekes, Spartan 
As recorded by Herodotus, Battle of Thermopylae, aka The Last Stand of the 500

Saturday, May 21, 2011


If you're here, you either have a chronic illness, or are curious about a different view of chronic illness. Welcome!

I'm here because I want to present a positive spin on chronic illness. Being sick sucks. Being sick without any end date sucks more. If you want to read about that, there are plenty of blogs out there, my old one included. But that's not this blog. 

A pessimist is presented with a room full of poo. "Aw, man! This is terrible! It's stinks, it's attracting flies... What a mess!"

An optimist is presented with a room full of poo and immediately starts digging: "with all this poo, there's gotta be a pony in here somewhere!"

We're gonna find that pony. Here, in this blog, I'm going to share with you my hard-earned experience in how to make this look awesome. I'm going to share with you what I've learned through trial and error. Everyone's experience is different. All the facts are different. But the feelings remain largely the same: helplessness, isolation, persecution (even if we know we did nothing wrong),  loss of identity, loss of support, fear of what's to come, wanting understanding, wanting dignity, et cetera.

The healthy world doesn't get chronic illness and never will. I didn't until it happened to me. Chronic pain is even more of a mystery until we experience it first-hand. I've been there where the pain was so bad and lasted so long that suicide seemed like a viable option. If I was given the chance to get better, I'd take that first, of course... But sometimes there are places so dark that it's nice to fantacize about it all being over even if you'd never take action on it. That's what the professionals call "passive suicidal ideation". 

And it's hard to pick up the shattered pieces of your heart and soul after going through epic experiences like that. It's hard to remember who we are because who were before is gone. That innocence is lost.

Pain is isolating. Chronic illness is isolating. No one sees the world like we do. And I don't even see the world the same way another chronically ill person does. We each have different threats, different physical needs. The facts may be different, but the feelings are often the same: alone, different, invisible, worthless, burdensome, etc. Some of us, myself included, live without the promise of a treatment, let alone a cure. We trudge a long, dark road to our inevitable (and frequently messy) demise.

Yes, this sucks. Yes, it's not going to get better. But... So what?

The key to walking through hell is: don't stop.

It's pretty impressive what I've actually managed despite what I've been through. I could compare myself to other people and notice all the things I'm not doing, but what I really should do is look at what I've been through and judge it on its own merits. Sure, I'd love to do more. I'd always love to do more. Normal... just never gonna happen. Reaching the appearance of normal is a feat in itself. 

Yeah, I can look at my life as a tragedy. Impending doom! But there are tragic heroes that I have loved. My love for them is not in their success, because they *don't* succeed. That's the nature of tragedy. But it was their spirit of ownership and perseverance that I loved. Western culture doesn't really promote that kind of story. It doesn't generally make for good TV. Critics love it, but most people prefer buying fantasies with tidy, triumphant endings. But I loved those guys.... Heads held stubbornly high despite the odds.

So that's my goal... and I hope to pass a little insight on to you. Whatever you have going on in your life, make this look awesome....