hyperchondria and cyberchondria

At bookclub, hubs used a term that I hadn't heard before. I was talking about how i was no longer going to google my weird symptoms because they just lead to crazytown, and he said, "oh, you've given up your cyberchondria." I didn't know there was a term for it, but apparently there is! Then in a weird synchronicity moment, i read "cyberchondria" in some article i was reading offline... funny, never heard it before this week.

I don't think it's necessarily a bad thing to be informed and do your own research. I'm a college educated lady with rather formidable critical thinking skills. I like to gather a bunch of resource materials and analyze them from different angles, whether we're talking literature, philsophy, medicine, knitting, or football. I'm a nerd - this is how i deal with the world.

the bad thing is that there is so much bad information out there on the internet. Some of it intentionally bad ("buy our crappy cure!"), some unintentional (self-proclaimed patient-experts), and some cover-your-ass language that makes reputable folks sound scarier than they probably intend (right-sided admonial pain means call a doc NOW!). and of course, everything hurts more, feels worse, starts flaring, seems scarier at 3:30 am. And what else is there to do at 3:30 am than google the thing that woke you up at 3:00 am?

But i felt like he said it kind of insultingly, and I feel like people use the term "hypochondria" as a put down sometimes. Like, "oh it's just you being a hypochondriac, you have nothing to really worry about." and I'm sure for some people that is true -- they take a little symptom, make a mountain out of a molehill (or a melanoma out of a mole), drive themselves and others nuts searching for diagnosis, spend way too much $$ and resources chasing something that doesn't exist. And sometimes if they do find something, it's not the answer they are looking for, or it doesn't account for everything, and the chase continues. I can see how that can be a negative.

However, when you are a child with a chronic condition, you are taught to pay more attention to your body than most folks. Then when you are raised in an family of hypochondriacs, you learn that behavior as well. So you can't just shrug it off as anxiety, you have proof that you are sick and fear that you are going to get sicker if you are not vigilant. It sucks that people who don't understand that background somehow feel entitled to write me off as a hypochondriac.

But I was heartened to recently read a article that the medical field is taking a different view of hypochondria. I do feel in the back of my mind that listing too many symptoms or reporting them too often just makes the doc go, "uh huh, yeah, whatever." I'm always afraid I'm getting a prescription for Placebon and not a real drug and that I'll sound like an idiot when the placebo-effect kicks in. I'm rather gullible and hate being deceived. Plus, I hate malingering. It bothers me when some people use an illness they don't have as an excuse. It undermines the rest of us that really have an issue, and makes people go, "uh huh, yeah, whatever" when we have to ask for special accomodation. I'd hate to be thought of as malingering, when I push so hard to function the best I can. recently, sometimes my best still kinda sucks.

I have to thank ChronicBabe for her great post and linking to the NYmag article. I'm totally going to use her 24-hr rule: basically, if a new symptom appears, give it 24 hrs before calling anyone. Exceptions will be made for barfing fire or things of that nature, of course.

anyway, back to my root. My grandmother is a hypochondriac, and passed that on to her kids, mostly her two eldest, my dad and my aunt M. My dad was always sick with something, looking for a reason for how he felt. As a kid, i was mean, and thought part of it was him trying to find an escape from the life he didn't like. He was discharged from the military due to allergies that were severe enough to interfere with his safety gear. He tried different crazy diets and supplements and constantly struggled with his weight.

He tried to get me tested for allergies and get me to start allergy shots as a kid, but I was needlephobic and stubborn. I got tested, but that was it. I had chronic bronchitis as a kid, probably from both parents smoking around me from day one. But it was 1979 and people were still dumb about second-hand smoke. Also, my hometown has one of the worst air qualities in the nation. So to help me not have crazy allergy and asthma attacks, we ripped out all the carpeting, i had no drapes, i couldn't have things that harbored dust mites, i had to wash my hands everytime i played with dogs or cats, I tried not to roll around in the grass or breathe in too much pollen. I had to be obsessed or else I would break out in hives, start wheezing and sneezing, and be generally miserable for hours until it was over. Nice childhood.

As I got older, I managed my allergies and just got used to being a little different from the rest of the kids. I took seldane-D until they took it off the market, then started claritin. It kept things under control. But hypochondria continued, because of possible drug interactions and side effects. I had to remember to be careful to never drink grapefruit juice and to remember to take my drugs every day, even when i was on camping trips. Kids today are way more medicated, but back then, I felt like a freak.

My dad's search for a diagnosis continued, eventually discovering hemochromatosis. Then he was obsessed with getting us tested to see if we were genetic carriers. Generally, the disorder doesn't affect women until after menopause, but he thought we should know. I was still needle/doctor phobic, and never intended to have kids anyway (at the wise old age of 15), and refused. For treatment, he had to go for regular bloodlettings. At this point, being a mean teenage girl, i totally thought he was exaggerating his illness, grasping at anything for an excuse. I resented him for not working harder to give us a better life. I was a crazy overachiever trying to escape a life i didn't like. I didn't want to live in the ghetto, living in fear of being violently attacked or my stuff stolen, with cheap knock-off sneakers and the fear of not being able to continue going to my private high school because we couldn't pay tuition. I blamed him. I figured he had a college degree and a good career -- if he pushed himself, we would have a better life. But he was happy going with the flow. I understand that now. I was kind of a bitch.

Quick side trip for Aunt M. She was always sick, mostly in the head. I half-heard horror stories and have a deep-seated fear of psychiatry as a result. She was manhandled by an ineffective psychiatric hospital system and broken. She's been on disability forever. Her husband got injured and tried to get on disability too. It's been a permanent vacation for them both, but they live in absolute poverty. I wondered as a kid if sometimes my dad wanted a break from being breadwinner too. My other aunt ended up schizo. I am still afraid i carry the same time bomb in my brain, but I think their environment had much to do with it (their dad could be considered emotionally abusive; their husbands were dirtbags).

Anyway, and so it went until I was safely away at college, and Dad got cancer. Whatever, people beat cancer every day. It was lung cancer, and since he was a smoker, it was a wake up call. He dutifully went through chemo, then radiation, then more chemo, but the tumor never got small enough to remove surgically. Then another tumor was discovered at the base of his tongue. More chemo and radiation, surgery was not an option. The tumor grew and grew and gradually took over. It was taking away his ability to breathe on his own. He would need a feeding tube and would never eat again. The night they put in the feeding tube, he went to sleep and died. He was 53.

He was so aware of his body, paid so much attention to his symptoms, and that little bastard cancer snuck up on him anyway. In women's health, they constantly scare-tactic you (check your breasts! get a pap! cancer is gonna get you!!!). Add that to my already anxious ocd self, and you wonder why I might over-google my disease and treatment options? I want to be ready. I accept that there are rare and serious side effects to Remicade. It's a bit like playing with fire -- with careful practice and respect for the element, you can be a gorgeous fire dancer, daring fire breather, experienced cook tending the camp's fire. But even the careful get burned and you have to be ready to repair yourself.

It's not healthy to obsess, I know, but it's not helpful to insult me for doing so either. Everything in life comes with a cost, I just want to make sure the cost is worth it and I get the best deal. So far, I am.