Given that this blog is entitled "love/sickness," it's a bit odd that I haven't written a post about love and illness yet. Part of the reason is that I'm single now, and I wasn't sure what to say about love and sickness. Then I realized being single and sick is a perfectly good topic in and of itself.
I've hardly ever been single in my life, so that's a struggle in and of itself. Then, piled up on top of it, are all of my feelings about being sick. As I am sure is the case with many sick people, I wonder if potential partners will like me less because of my chronic illnesses. The dating scene is tough enough already, and people naturally fear rejection, so it's even worse when you feel like you have a couple extra strikes against you. Being sick adds an additional quantum of uncertainty to a dating situation, as you're never sure how someone is going to take it. In my experience people have more positive reactions than I expect, but that might be because I tend to think in terms of worst case scenarios.
Sometimes it's not the dating that scares me the most. Those are the times when I'm more worried about going through sick things alone. While I realize I've gone through a lot by myself, either during times I was single or times when my partners did not take care of me, I can't help but fear going through that again. Some of those experiences were flat out traumatic. An example would be the times I had serious bronchial illnesses and didn't know if I'd make it through the night. When I was a minor, my mom would selflessly stay up all night and make sure I kept breathing. When you're an adult (at least in our society), you can't be sure that someone will take that kind of care of you. With some of my exes it was a miracle if they made me pancakes, much less commit a major act of self-sacrifice.
Other parts of the single and sick life weren't as extremely bad, but really wore on me. There was a year when I was pretty sickly, single, and living far from almost everyone I knew. I had few friends in the town where I was attending grad school, and I definitely didn't have any other sick friends. Very few people knew I was sick, and no one in the world knew the full story. I just felt so fucking miserable about everything that I wished someone would step in and care. That's not a very good reason to date people, though. You have to do it for the same reasons as everyone else, or it won't work. It has to be about the way they make you feel sick to your stomach in an *exciting* way, the fact that you care about them regardless of their flaws, etc. If you're really lucky, they will extend the same affection to you, overlook your flaws, and accept your chronic illnesses.
Recently I've found myself haunted by the times that sickness has been a relationship issue in the past. I can still hear my ex-boyfriend's parents saying, "well, we're glad you broke up and didn't have kids, because you're obviously genetically inferior." To their credit, they are evolutionary biologists and that is how they talk about anything, but it was still an incredibly insensitive thing to say. And it's not like food allergies and asthma (the illnesses they knew about) are death sentences. If we had some allergic kids, they would just have to eat coconut ice cream instead of regular ice cream. And I might make them eat extra healthy. And maybe they couldn't run as fast as the other kids. That's my life, and I think it's worth living.
I also remember the times when I got sick and my partners just stared at me blankly, scared shitless, totally uncomfortable, knowing there was nothing they could do to make a situation "better." There were also the times I occupied my partners' beds, too sick and incapacitated to go home to my own. That's a shitty spot to be in. There are of course the infinitely many nerdy moments of being sick like "I can't drink... I need to take double-Benadryl tonight," and "Hold on... I need to use my inhaler first," and "I think dinner is giving me hives." And of course, nothing ruins a date night like, "Hey, can you take me to the hospital? I think I really am having too much trouble breathing." Or the time when I tried to hook up with my diabetic friend, but he ended up overdoing his insulin at dinner and I got sick from whatever was in the food I ate. Good times.
While I could recite a pretty long litany of similar experiences, I think there's one that takes the cake. It seemed worse than others because it was early on in a relationship, and I didn't know the person that well. I had spent the night at an anarcho-co-op house where the person had lived and woke up feeling... off. It had been very, very hot for quite some time, probably over 100 but I don't remember for sure. The house was moldy, old, and not air conditioned. I had some trouble breathing in the night but shrugged it off and thought that I could put up with it for my politics and for lurve. When I finally stood up in the morning (afternoon, whatever), I experienced a near complete loss of my vision, my ears stopped up, and I felt nauseated. I stumbled blindly down the hall, past a few people, and out the door, only to have my first full-unconsciousness fainting spell right there on the porch. I have some memory of what happened during the faint, but let's just say it is so embarrassing that I can't even mention it in the anonymous halls of les internets. It didn't end up affecting my relationship at all, probably by some combination of the facts that the girl was still asleep, never got the full story, and was going to dump me shortly thereafter anyway.
Now that I'm single, I'm trying to make meaning of such experiences. Were these incidents so bad that I should warn people of what they might potentially be getting into? Am I worth dating at all? It seems that none of my exes would say that my sickness was so bad that I shouldn't have dated them at all, and it seems that it was often no worse than the crap their other exes put them through. But what are the actual implications of my chronic illnesses for relationships? Was chronic illness more of a factor in break-ups than I thought? Did people get sick of hearing me bitch and moan about my treatment protocols, allergy shots, doctors visits, and expenses?
I guess I'll never really know the answers to these questions. All I can do is focus on how I will handle these issues differently in the future. I think the biggest lesson I've learned is that I need alternative sources of support. I can't rely on one person to make it all better--especially when I'm never going to get "all better." I think it's really beneficial that I have sickly friends now, so that I can have a more productive outlet for the neurotic energy that accompanies my chronic illnesses. It's also helpful to hear what their experiences of illness in relationships has been like.
There is definitely the issue of when to tell people things, and how much to tell. n the past, I covered up my chronic illnesses, and kept them hidden for entire relationships. One of my exes just found out this stuff seven years after our three year long relationship ended. It's not like I totally succeeded in keeping my secrets, of course. They all had suspicions, all knew something was awry. Occasionally I wonder if that was the best way to deal with sickness, to keep it as a secret so that no one had to worry, but the truth always reared its ugly head, either in front of them, or in private. You can't keep it bottled up forever, especially around the people you care about the most in the world.
Now, I'm all for letting people know as soon as it is relevant. With food allergies, I usually tell people right away. Given the number of food limitations I have, the person will know pretty quickly that something is up. Sometimes I forget to tell people about the asthma, seasonal allergies, or GERD, but that's mostly because they're becoming less and less of an issue, and are actually slipping my mind for the first time in many years. When they do come up, it's not any worse than someone getting a horrible headache or a nasty cold.
Perhaps the hardest thing to hide is how I feel about the illnesses. I'm feeling really great for the first time in 12 years, and sometimes I just want to run with it and pretend like nothing ever happened. I know I've made major improvements in managing my illnesses, but the specter of their past and possible future still haunts me. I have a hard time not dumping out the whole story to every new person I meet, but it almost seems irrelevant at the moment. And I'm never sure what to say about the future. It's hard to tell people "I'm OK... at least for now..." and "I know what's wrong with me... sort of" and "I don't expect to get very sick again... any time soon."
And of course, with my illnesses being interrelated, it's hard to give people just a slice. I often just tell people about the food allergies, but then they start asking how a person could become allergic to so many things. Then I have to get into all the hell of living in moldy houses, getting really sick, having my chronic illnesses get worse, and becoming oversensitive to everything. That of course begs the question of how I will stay healthy in the future, and what I'm doing to maintain that health so... the ghosts of sickness past and future always pop their way into the conversation, as much as I try to keep them at bay.
All of this said, I'm looking forward to trying again someday. To laying myself bare, and seeing who will take me (like every other single person). To finding out who is strong enough and loving enough to care. It's not that I am so unlovable... moreso that chronic illness is not what a lot of people bargained for, nor what fits into their ideas of life and relationships at a given time. Also, there are a lot of people who haven't been through much in their lives, and can't really relate or understand trauma. I understand that, and don't want to end up with anyone who isn't ready for what I've been through, and could possibly go through again.
There are people who are strong enough, many of whom I count as my friends, and some who have been my partners. Here's to the search for such people, once again. Someday.
Thursday, January 22, 2009
the real reason we don't have national health care?
It is often argued that if Western Europe, Canada, Japan, Brazil, China, the UAE, Israel, Qatar, India, South Korea, Australia, New Zealand, Kuwait, Taiwan, Sri Lanka, Malaysia, Thailand and even Uganda have national health care systems, the United States should also have socialized medicine. People who make this claim often cite the fact that the United States has more money than any of the other countries with socialized medicine, and some of the best doctors in the world. However, maybe the United States can't have socialized medicine because one factor is significantly different in the US than in other developed nations: demand.
Americans are the least healthy people in the developed world, and this might be part of the reason we don't have a national healthcare system. First off, our lifestyle is really not healthy. We eat food that is of low quality and travels far to get to us. Most people don't even eat real food, but instead eat processed food and food products. We have high rates of alcoholism, and smoking. On top of it, we don't like to exercise. It's just not fun, so why do it? And of course, we allow our cities and environment to become incredibly polluted. Put all of these factors together and we should be the most at-risk for serious disease. True, our health care system does do a great job of taking care of us when we become sick or in danger of dying (provided you have insurance or lots of cash), but as many doctors and public health officials know, prevention and a healthy lifestyle are the best way to avoid many of the major causes of premature (and expensive) death. Additionally, our nasty lifestyle also puts us more at risk for non-life-threatening illness, and we have more acute care throughout our lives than people in other countries. So what's a sickly nation to do?
While these issues would present a challenge to having a national health system, especially in the beginning, it's also a call to action. The health care system in the United States is clearly failing. We are getting less healthy over time, despite improvements in technology. We are critically lacking in preventative care both structurally (there isn't enough emphasis on it from hospitals and other care facilities) and as individuals (most people can't get it/can't afford it). It is hard to disseminate public health information in this incredibly overburdened system, and there is no real authority to communicate new health information. We allow medical decisions and policy to be determined by the public's ability to pay for treatments, rather than prioritizing what would actually make the country most healthy. Economists would say this is a problem of scale and risk. Right now, medicine is centered around an individual patient, his/her disease risk, and ability to pay. With a single-payer system, the risk is pooled, and a person with bad luck is not financially totalled by their health care costs. Nor is the country, as not that many people die from catastrophic accidents anyway.
As unpopular as it sounds, a good solution may very well be to increase taxes but abolish private health insurance companies. Think about this option. If we had single payer health care, the costs to the individual would be less, the costs to companies would be less, and insurance provisions for employees could be made compulsory. Those who cannot work would be or who end up in very expensive medical situations could be covered from surpluses that go into the system for the healthy.
I'll use myself as an example. Right now I pay about $636 a year for health care, plus a little over a thousand a year in drug and appointment co-pays (plus about $1,615 a year for Chinese medicine. thanks for not covering the only thing that works for me, insurance companies). This is how much it costs to maintain my health in a good year (yikes). On top of this, my company is actually paying over $5,000 a year to insure me. And they're paying for the costs of my care ($2,460 paid in for drugs, about $600 for medical visits). That puts the amount paid for me to have Western medical treatment at about $9,696 per year. If the government instead taxed me about $1,000 a year (less than my insurance and co-pays), and taxed my employer about $2,000 a year, it would cover my prescriptions and medical visits and cost about $6,000 less to treat me for a year. It would cost me $636 less a year, and my employer $6,000 less.
One could say that such a plan would destroy the health care industry, and that it would be devastating to all of those who would lose their jobs. I won't deny that, and there would definitely have to be some sort of plan to compensate for the loss of that sector of the economy. Obama's plan to have 300,000 work on digitizing medical records is a step in that direction. However, we can't deny that the situation is already devastating to so many people. While it would be economically damaging to do away with private health care, it's already economically disastrous to have individuals be responsible for all of their health care, even in times of crisis; for American families to over-pay for their coverage; and for the insurance companies to focus on the health of their stock prices over that of consumers. Companies and small businesses especially could benefit from paying less for health care in this time of crisis. Seventy nine MILLION Americans are already struggling with insurance debt. Can we really afford to keep on living like this?
Americans are the least healthy people in the developed world, and this might be part of the reason we don't have a national healthcare system. First off, our lifestyle is really not healthy. We eat food that is of low quality and travels far to get to us. Most people don't even eat real food, but instead eat processed food and food products. We have high rates of alcoholism, and smoking. On top of it, we don't like to exercise. It's just not fun, so why do it? And of course, we allow our cities and environment to become incredibly polluted. Put all of these factors together and we should be the most at-risk for serious disease. True, our health care system does do a great job of taking care of us when we become sick or in danger of dying (provided you have insurance or lots of cash), but as many doctors and public health officials know, prevention and a healthy lifestyle are the best way to avoid many of the major causes of premature (and expensive) death. Additionally, our nasty lifestyle also puts us more at risk for non-life-threatening illness, and we have more acute care throughout our lives than people in other countries. So what's a sickly nation to do?
While these issues would present a challenge to having a national health system, especially in the beginning, it's also a call to action. The health care system in the United States is clearly failing. We are getting less healthy over time, despite improvements in technology. We are critically lacking in preventative care both structurally (there isn't enough emphasis on it from hospitals and other care facilities) and as individuals (most people can't get it/can't afford it). It is hard to disseminate public health information in this incredibly overburdened system, and there is no real authority to communicate new health information. We allow medical decisions and policy to be determined by the public's ability to pay for treatments, rather than prioritizing what would actually make the country most healthy. Economists would say this is a problem of scale and risk. Right now, medicine is centered around an individual patient, his/her disease risk, and ability to pay. With a single-payer system, the risk is pooled, and a person with bad luck is not financially totalled by their health care costs. Nor is the country, as not that many people die from catastrophic accidents anyway.
As unpopular as it sounds, a good solution may very well be to increase taxes but abolish private health insurance companies. Think about this option. If we had single payer health care, the costs to the individual would be less, the costs to companies would be less, and insurance provisions for employees could be made compulsory. Those who cannot work would be or who end up in very expensive medical situations could be covered from surpluses that go into the system for the healthy.
I'll use myself as an example. Right now I pay about $636 a year for health care, plus a little over a thousand a year in drug and appointment co-pays (plus about $1,615 a year for Chinese medicine. thanks for not covering the only thing that works for me, insurance companies). This is how much it costs to maintain my health in a good year (yikes). On top of this, my company is actually paying over $5,000 a year to insure me. And they're paying for the costs of my care ($2,460 paid in for drugs, about $600 for medical visits). That puts the amount paid for me to have Western medical treatment at about $9,696 per year. If the government instead taxed me about $1,000 a year (less than my insurance and co-pays), and taxed my employer about $2,000 a year, it would cover my prescriptions and medical visits and cost about $6,000 less to treat me for a year. It would cost me $636 less a year, and my employer $6,000 less.
One could say that such a plan would destroy the health care industry, and that it would be devastating to all of those who would lose their jobs. I won't deny that, and there would definitely have to be some sort of plan to compensate for the loss of that sector of the economy. Obama's plan to have 300,000 work on digitizing medical records is a step in that direction. However, we can't deny that the situation is already devastating to so many people. While it would be economically damaging to do away with private health care, it's already economically disastrous to have individuals be responsible for all of their health care, even in times of crisis; for American families to over-pay for their coverage; and for the insurance companies to focus on the health of their stock prices over that of consumers. Companies and small businesses especially could benefit from paying less for health care in this time of crisis. Seventy nine MILLION Americans are already struggling with insurance debt. Can we really afford to keep on living like this?
Tuesday, January 20, 2009
sickness on the internet
I'm trying to find links and kindred blogs to note here, but it's hard. I'll find a great sickness link by accident every now and then, but when I consciously try to look for this kind of stuff it always evades me. It doesn't help that someone branded McCain a healthcare "radical," so much of the radical health care sites I find are about McCain.
Many of the sites I do find are very large scale and institutionally-sanctioned. Yeah, there's a time and a place for the American Lung Association webpage, but those "official" medical blogs can be really dry and boring. I'm all about reconsidering how certain conditions are treated by the medical community, in this health insurance milieu, and in our society more generally, and that's not what you will find on government/hospital/pharma/non-profit sponsored sites. Also, I've already read about a dozen articles along the lines of "Ten Summer Tips for Asthma!" and I don't want my own website to end up like that. This blog is meta!
I'm fine with having some really general links, like webmd.com, which have helped a lot of sickly people, but I'm struggling to find more blogs like my own. If you're reading this and you have related thoughts on sickness and politics, you should post your link as a comment and I'll add it on! I'm especially interested in personal accounts of living with illness and websites that build community amongst people dealing with chronic illnesses, but do leave me a comment if you're working on anything related.
Thanks!
Many of the sites I do find are very large scale and institutionally-sanctioned. Yeah, there's a time and a place for the American Lung Association webpage, but those "official" medical blogs can be really dry and boring. I'm all about reconsidering how certain conditions are treated by the medical community, in this health insurance milieu, and in our society more generally, and that's not what you will find on government/hospital/pharma/non-profit sponsored sites. Also, I've already read about a dozen articles along the lines of "Ten Summer Tips for Asthma!" and I don't want my own website to end up like that. This blog is meta!
I'm fine with having some really general links, like webmd.com, which have helped a lot of sickly people, but I'm struggling to find more blogs like my own. If you're reading this and you have related thoughts on sickness and politics, you should post your link as a comment and I'll add it on! I'm especially interested in personal accounts of living with illness and websites that build community amongst people dealing with chronic illnesses, but do leave me a comment if you're working on anything related.
Thanks!
Wednesday, January 14, 2009
physical illness and mental health/mental illness and physical health
Today I started seeing a therapist to help cope with my experience of chronic illness.
I feel kind of like a hack, a cheat, or some other no-good thing. I'm actually the healthiest I've been in my whole adult life, and here I am getting therapy about what a hard experience it was to be so sick for so long. But I guess that's the way it goes, sometimes. For the twelve years where I was quite ill, I really needed to be as strong as possible to make it through. If I had doubted my ability to cope with it at any time, I would have fallen apart. I did, at times, wonder how long I could live, feeling as crappy as I did. I thought about killing myself, assured that I would never feel better, and convinced by my doctors that there were no good solutions for my problems. Ultimately, though, I resolved to slog through it. During the tough times I always told myself there would be another day, week, or season where I would feel good. The acute viral lung infection that was making my asthma unbearable would pass. The attack wouldn't kill me this time. Summer would end, and then I'd be able to breathe in the cooler, less humid, less moldy, ozone-free air. I'd meet someone someday who would understand. With medicine, alternative therapies, and the passage of time, I did get over those physical ailments. And through talking with friends, and meeting people within the sickly radical community, I have met people who understand. I think I found one partner who really understood, but I let him go a long time ago.
While I feel a little ridiculous for going to see a therapist to unpack all of this, I realize that there is good reason. Chronic illness is a really big thing, even if we have to make it smaller to make it manageable. It's not necessarily healthy that we have to grin and bear it at school, at work, or around friends. And if people do treat you badly when you're sick, it can really mess you up in the head. There have been times in my life when family members and partners were unable to help me at all, or even made me feel worse about being sick, and it can take time to get over that. I'm really open with people, but I'm not sure if I'm really big on genuinely trusting people, and I think the way I've been treated when sick has something to do with it. There's also issues with how your doctors treat you. Doctors can be really informative, supportive, empowering and provide radical new thinking about your illness (if any doctors are reading my blog... this could be you!). That is of course not always the case. Some of my doctors treated me like my chronic illnesses were no big deal. One said "You feel bad? You should talk to my transplant cases." Yeah, I didn't need a new lung at the time, but I think it's still valid to say it sucked to be living on about 25% lung capacity. Or some doctors would comment on my IBS, saying "at least it's not ulcerative colitis." While it was good that I wasn't crapping out blood, and in as much pain, it was still problematic that I didn't want to be more than 15 minutes away from a bathroom for a little over a decade there.
So here I am trying to work through my own shit. How fucked up is it that I'm fairly healthy and happy right now, and I can't cope with that? It's so abnormal for me that I don't really know what to make of it. If I have a really really good day, I wonder to myself if I'm hypomanic, but then realize that it's probably just what it feels like to be really happy. On a related note, I felt so happy after regaining a lot of my health, as I got a glimpse at how good a normal life could be. I really did feel like the world was a better place. Of course reality sets in again, and you realize you're in the same world you always were, only your position in it got slightly better.
If you're like me, it still takes so much to be healthy, and I feel worn down and so tired tired tired from all of the hell of these years, and all of the extra work of being sick. I feel so bad for telling people I don't want to go out because I'm mentally trying to recover from all of this, or I'm overwhelmed by how hard it is to cook my super-hypoallergenic food for myself, or because I'm secretly still having some sinus problems, some allergy problems, or whatever it is on a given day. Once I got healthy I put the sickness away for a little while, and I'm a bit discouraged that it's still there, just not as bad. I'm so glad I reached out to people, and it has made all the difference in the world for me to have the support of my friends, but I still feel guilty boring them with the details of the pills and supplements I had to take on a given day, the volume of phlegm in my body, or concerns about whether I should still see an immunologist. While I'm "healthy... ish," a lot of my day, almost every day, is taken up by maintaining my health, and thinking about such banal things.
I'm also pretty frustrated by the fact that it was so easy for me to get healthy, but took so long to find out. Had I known I was allergic to milk, I could have cut it out in middle school or high school and have done far less damage to my body. If I had known that antibiotics, steroids, and other prescribed medications were wrecking havoc on my body in unexpected ways, I would have cut them off and tried alternative treatments sooner. If doctors knew anything about probiotics and hypoallergenic diets, I could have been so much better, so much faster. I am frustrated that science can't change its mind on things faster, or consider alternatives more easily. It's like there is this "medical/scientific knowledge" engraved in stone somewhere, and in order to rewrite it you have to prove that your alternative treatment has a whole valid history. You have to create documentation of it through experiments, journal articles, and convincing really important people in the field. Treatments that have been tested through long-term use (i.e. thousands of people have done it and are fine!), like acupuncture, chinese medicine, and probiotics can't be accepted into the canon until they are proven. Just yesterday I was reading an article on alternative and complementary treatments for irritable bowel (IBS) and they warn that none of this has been proven, and that you should ask your doctor first. It's rare that any random doctor knows whether a supplement not accepted by the medical community at large works or not. Most of my doctors have said "if it works, and isn't hurting you, keep it up!" but they never really believe in any of my solutions. The allergy clinic people are very impressed by my recovery, but they're attributing it completely to allergy shots (even though I haven't taken them long enough for them to be effective). As if allergy shots healed my ailing intestines.
I'm also really pissed that it has taken so long to get better. I started figuring out what was wrong in 2005, nearly four years ago. I struggled through my second year of grad school knowing what was wrong, but not having the time or money to take care of it. I spent the first year and a half of my job getting to a place where I had enough money, time, and energy to really take care of it. It took me 18 months to find a house with very little mold. On top of it, I was getting sicker, which was making it harder for me to have the money, time and energy to do anything about it. Funny how that works. Even my monthly over-the-counter expenditures were prohibitively expensive, and then after you throw prescriptions and doctor's copays on top of that, I was flat broke. I'm able to spend more on my health now, but it's still leaving me flat broke.
I'm devoting this next year to getting really really healthy, to doing everything I can to make myself better, but I'm so frustrated that it's taking five years to get better. I feel like that's a ridiculously long amount of time to put a lot of things on "hold" for. And of course, now that I'm healthy my perspective on things is changing radically. It's easy to look back and say "oh, if I'd been healthy earlier, I could have gotten so much farther on that educational/professional/personal goal," or I would have taken up on a certain opportunity, or gone on a trip, or taken a chance with someone, but I think we can't second guess ourselves like that. At this point, as difficult as it is, and as much as I need time to heal physically and mentally, I can only be grateful that I found out when I did, and not later. As easy as it would have been to know sooner, it would have been equally as likely that I would have found out later, like in my 30s or 40s. My parents are just finding things out about their health through me, and they're over 60.
All of this sickly stuff does cumulatively get to a person, over time. You can live a perfectly healthy, happy life with chronic illness; but at the same time, it's good to acknowledge that it's hard, and that you put a lot more work into it than other people. Between reaching out to friends (after finally having to admit how sick I was), and seeking therapy, I think I'm finally finding the support I need and should have sought long ago.
I feel kind of like a hack, a cheat, or some other no-good thing. I'm actually the healthiest I've been in my whole adult life, and here I am getting therapy about what a hard experience it was to be so sick for so long. But I guess that's the way it goes, sometimes. For the twelve years where I was quite ill, I really needed to be as strong as possible to make it through. If I had doubted my ability to cope with it at any time, I would have fallen apart. I did, at times, wonder how long I could live, feeling as crappy as I did. I thought about killing myself, assured that I would never feel better, and convinced by my doctors that there were no good solutions for my problems. Ultimately, though, I resolved to slog through it. During the tough times I always told myself there would be another day, week, or season where I would feel good. The acute viral lung infection that was making my asthma unbearable would pass. The attack wouldn't kill me this time. Summer would end, and then I'd be able to breathe in the cooler, less humid, less moldy, ozone-free air. I'd meet someone someday who would understand. With medicine, alternative therapies, and the passage of time, I did get over those physical ailments. And through talking with friends, and meeting people within the sickly radical community, I have met people who understand. I think I found one partner who really understood, but I let him go a long time ago.
While I feel a little ridiculous for going to see a therapist to unpack all of this, I realize that there is good reason. Chronic illness is a really big thing, even if we have to make it smaller to make it manageable. It's not necessarily healthy that we have to grin and bear it at school, at work, or around friends. And if people do treat you badly when you're sick, it can really mess you up in the head. There have been times in my life when family members and partners were unable to help me at all, or even made me feel worse about being sick, and it can take time to get over that. I'm really open with people, but I'm not sure if I'm really big on genuinely trusting people, and I think the way I've been treated when sick has something to do with it. There's also issues with how your doctors treat you. Doctors can be really informative, supportive, empowering and provide radical new thinking about your illness (if any doctors are reading my blog... this could be you!). That is of course not always the case. Some of my doctors treated me like my chronic illnesses were no big deal. One said "You feel bad? You should talk to my transplant cases." Yeah, I didn't need a new lung at the time, but I think it's still valid to say it sucked to be living on about 25% lung capacity. Or some doctors would comment on my IBS, saying "at least it's not ulcerative colitis." While it was good that I wasn't crapping out blood, and in as much pain, it was still problematic that I didn't want to be more than 15 minutes away from a bathroom for a little over a decade there.
So here I am trying to work through my own shit. How fucked up is it that I'm fairly healthy and happy right now, and I can't cope with that? It's so abnormal for me that I don't really know what to make of it. If I have a really really good day, I wonder to myself if I'm hypomanic, but then realize that it's probably just what it feels like to be really happy. On a related note, I felt so happy after regaining a lot of my health, as I got a glimpse at how good a normal life could be. I really did feel like the world was a better place. Of course reality sets in again, and you realize you're in the same world you always were, only your position in it got slightly better.
If you're like me, it still takes so much to be healthy, and I feel worn down and so tired tired tired from all of the hell of these years, and all of the extra work of being sick. I feel so bad for telling people I don't want to go out because I'm mentally trying to recover from all of this, or I'm overwhelmed by how hard it is to cook my super-hypoallergenic food for myself, or because I'm secretly still having some sinus problems, some allergy problems, or whatever it is on a given day. Once I got healthy I put the sickness away for a little while, and I'm a bit discouraged that it's still there, just not as bad. I'm so glad I reached out to people, and it has made all the difference in the world for me to have the support of my friends, but I still feel guilty boring them with the details of the pills and supplements I had to take on a given day, the volume of phlegm in my body, or concerns about whether I should still see an immunologist. While I'm "healthy... ish," a lot of my day, almost every day, is taken up by maintaining my health, and thinking about such banal things.
I'm also pretty frustrated by the fact that it was so easy for me to get healthy, but took so long to find out. Had I known I was allergic to milk, I could have cut it out in middle school or high school and have done far less damage to my body. If I had known that antibiotics, steroids, and other prescribed medications were wrecking havoc on my body in unexpected ways, I would have cut them off and tried alternative treatments sooner. If doctors knew anything about probiotics and hypoallergenic diets, I could have been so much better, so much faster. I am frustrated that science can't change its mind on things faster, or consider alternatives more easily. It's like there is this "medical/scientific knowledge" engraved in stone somewhere, and in order to rewrite it you have to prove that your alternative treatment has a whole valid history. You have to create documentation of it through experiments, journal articles, and convincing really important people in the field. Treatments that have been tested through long-term use (i.e. thousands of people have done it and are fine!), like acupuncture, chinese medicine, and probiotics can't be accepted into the canon until they are proven. Just yesterday I was reading an article on alternative and complementary treatments for irritable bowel (IBS) and they warn that none of this has been proven, and that you should ask your doctor first. It's rare that any random doctor knows whether a supplement not accepted by the medical community at large works or not. Most of my doctors have said "if it works, and isn't hurting you, keep it up!" but they never really believe in any of my solutions. The allergy clinic people are very impressed by my recovery, but they're attributing it completely to allergy shots (even though I haven't taken them long enough for them to be effective). As if allergy shots healed my ailing intestines.
I'm also really pissed that it has taken so long to get better. I started figuring out what was wrong in 2005, nearly four years ago. I struggled through my second year of grad school knowing what was wrong, but not having the time or money to take care of it. I spent the first year and a half of my job getting to a place where I had enough money, time, and energy to really take care of it. It took me 18 months to find a house with very little mold. On top of it, I was getting sicker, which was making it harder for me to have the money, time and energy to do anything about it. Funny how that works. Even my monthly over-the-counter expenditures were prohibitively expensive, and then after you throw prescriptions and doctor's copays on top of that, I was flat broke. I'm able to spend more on my health now, but it's still leaving me flat broke.
I'm devoting this next year to getting really really healthy, to doing everything I can to make myself better, but I'm so frustrated that it's taking five years to get better. I feel like that's a ridiculously long amount of time to put a lot of things on "hold" for. And of course, now that I'm healthy my perspective on things is changing radically. It's easy to look back and say "oh, if I'd been healthy earlier, I could have gotten so much farther on that educational/professional/personal goal," or I would have taken up on a certain opportunity, or gone on a trip, or taken a chance with someone, but I think we can't second guess ourselves like that. At this point, as difficult as it is, and as much as I need time to heal physically and mentally, I can only be grateful that I found out when I did, and not later. As easy as it would have been to know sooner, it would have been equally as likely that I would have found out later, like in my 30s or 40s. My parents are just finding things out about their health through me, and they're over 60.
All of this sickly stuff does cumulatively get to a person, over time. You can live a perfectly healthy, happy life with chronic illness; but at the same time, it's good to acknowledge that it's hard, and that you put a lot more work into it than other people. Between reaching out to friends (after finally having to admit how sick I was), and seeking therapy, I think I'm finally finding the support I need and should have sought long ago.
Friday, January 9, 2009
you are what you eat/you eat where you are
A couple days ago, CNN posted a link to an unusual weight loss story. Five months ago three morbidly obese Americans embarked on a trip to Tianjin, the third largest city in China, to get away from their unhealthy habits back home. They had won a contest by a Chinese medicine firm, and their entire stay at an in-patient weight loss facility was free until they reached their target weights. All three men are succeeding admirably, having collectively lost over 400 lbs.
This reminds me of a treatment facility here in Durham, at Duke no less. The Duke Rice Diet Clinic is located about three blocks from where I work. People come from near and far to pay as much as $2,300 per week (PLUS off-site lodging) to lose weight. Treatment takes up to 12 hours a day, and all meals are eaten on-site. For those who are trying to lose very large amounts of weight, or who can't resist the temptation to eat bad food without imprisonment, there are inpatient clinics. If you want an allergist at the Duke medical clinics you'll have to get on the waiting list for one of the handful they have, but if even your heart is fat there are seventy-one cardiologists to choose from, all apparently accepting new patients.
It's amazing that people literally need to leave their hometowns and lifestyles in order to lose weight. It is equally shocking to realize that we need stories like these in order to really understand the obesity epidemic, but it makes sense. Our society isn't geared toward goals like good health, happiness, or cooperation--it's structured instead around production and competition at every turn. For most Americans and domestic food companies, food is no longer about nutrition. Food has become little more than a commodity, an opportunity for profit, and a lifestyle "experience." In less grand terms, we've sold our food supply off to companies that don't have our interests at stake at all. If injecting needless fat, salt, sugar, and additives into food sells it, then the companies will never stop doing it so long as we live in a country where genuine business ethics verge on nonexistence. And through their partnerships with chain restaurants, gas stations, and grocery stores, these companies have managed to place themselves everywhere in your life. It's no wonder that we have trouble losing weight and keeping it off when Frito-Lay lives in your neighborhood. And is at the corner store. And at the restaurant near your work. And is all over the grocery store.
So what would it take to change the country, rather than a few individuals? Not every overweight person can ship themselves to Tianjin or scenic Durham, after all. What would have to happen would be that we'd have to change the whole culture, and we'd have to create incentives for companies to make healthier products. Or disincentives for creating bad products. New York is considering one such measure right now, a controversial one that I've only privately fantasized about until now. They're thinking about slapping an 18% tax on sugary soda, arguing that the 35 gallons of it we each drink a year might have some connection to our burgeoning waistlines.
Such measures are destined to meet strong resistance, but it's one of the only things we can do. It's not like public service announcements or advertising, which give people more "choice," are much better. The one or two government adverts people see a year related to health are invariably lost in the sea of advertisements telling us to eat, drink, be merry, be sexy, go shopping while you're at it, have you seen this new movie yet?, is that an iPod? yeah, you get the point. Fox was quick to brand the tax as an outright scam, linking it to the greedy government and PUBLIC HEALTH INDUSTRY. Wow, if ever I could think of a profit-driven, evil industry, it would surely be the public health industry. All of those graduate-educated people working for the public good, earning $35,000 a year, yeah, they are assholes out to get you. Fox would prefer to leave decisions about what drinks to make and consume in the hands of companies and consumers... because we're obviously doing such a great job regulating ourselves.
In China, on the other hand, being obese is shocking. All three men were in desperate physical condition in the United States, and one even had to have a tracheotomy since the fat on his body collapsed his windpipe, but we live in a culture where it has to go to that extreme before we care about physical health or will imply that people should change their behavior. China is often critiqued for public health decisions it has made, such as choosing to vaccinate tens of thousands rather than doing a single heart bypass surgery, but perhaps we have something to learn from them.
I've noticed similar things in my travels, as of late. In the last year I've been lucky enough to go to Montreal, Madison, Chicago, and San Francisco. With the exception of Chicago, all of these were places had significantly better food than an average American city, and the difference showed. San Francisco and Montreal are of course two of the best places in North America for food that is closer to the farm, and consequently healthier. Obesity seemed to be less of an issue, and from a personal perspective I have to say I felt fabulous eating the food in these places. Despite the fact that I eat what is a pretty "extreme" diet for where I live in the US (no dairy, no soy, due to food allergies; cut out most wheat, sugar, and additives to try to get over my allergies, asthma, and other problems), I still don't feel as healthy as when I go to California, where the food is much higher quality and more often locally grown.
So what do we do? If it takes traveling to or imprisoning oneself in a place that values natural food and health to feel better, it seems that incorporating those values into our own, somehow, would be the best bet. Now all we have to do is convince everyone else.
Tag. You're it!
This reminds me of a treatment facility here in Durham, at Duke no less. The Duke Rice Diet Clinic is located about three blocks from where I work. People come from near and far to pay as much as $2,300 per week (PLUS off-site lodging) to lose weight. Treatment takes up to 12 hours a day, and all meals are eaten on-site. For those who are trying to lose very large amounts of weight, or who can't resist the temptation to eat bad food without imprisonment, there are inpatient clinics. If you want an allergist at the Duke medical clinics you'll have to get on the waiting list for one of the handful they have, but if even your heart is fat there are seventy-one cardiologists to choose from, all apparently accepting new patients.
It's amazing that people literally need to leave their hometowns and lifestyles in order to lose weight. It is equally shocking to realize that we need stories like these in order to really understand the obesity epidemic, but it makes sense. Our society isn't geared toward goals like good health, happiness, or cooperation--it's structured instead around production and competition at every turn. For most Americans and domestic food companies, food is no longer about nutrition. Food has become little more than a commodity, an opportunity for profit, and a lifestyle "experience." In less grand terms, we've sold our food supply off to companies that don't have our interests at stake at all. If injecting needless fat, salt, sugar, and additives into food sells it, then the companies will never stop doing it so long as we live in a country where genuine business ethics verge on nonexistence. And through their partnerships with chain restaurants, gas stations, and grocery stores, these companies have managed to place themselves everywhere in your life. It's no wonder that we have trouble losing weight and keeping it off when Frito-Lay lives in your neighborhood. And is at the corner store. And at the restaurant near your work. And is all over the grocery store.
So what would it take to change the country, rather than a few individuals? Not every overweight person can ship themselves to Tianjin or scenic Durham, after all. What would have to happen would be that we'd have to change the whole culture, and we'd have to create incentives for companies to make healthier products. Or disincentives for creating bad products. New York is considering one such measure right now, a controversial one that I've only privately fantasized about until now. They're thinking about slapping an 18% tax on sugary soda, arguing that the 35 gallons of it we each drink a year might have some connection to our burgeoning waistlines.
Such measures are destined to meet strong resistance, but it's one of the only things we can do. It's not like public service announcements or advertising, which give people more "choice," are much better. The one or two government adverts people see a year related to health are invariably lost in the sea of advertisements telling us to eat, drink, be merry, be sexy, go shopping while you're at it, have you seen this new movie yet?, is that an iPod? yeah, you get the point. Fox was quick to brand the tax as an outright scam, linking it to the greedy government and PUBLIC HEALTH INDUSTRY. Wow, if ever I could think of a profit-driven, evil industry, it would surely be the public health industry. All of those graduate-educated people working for the public good, earning $35,000 a year, yeah, they are assholes out to get you. Fox would prefer to leave decisions about what drinks to make and consume in the hands of companies and consumers... because we're obviously doing such a great job regulating ourselves.
In China, on the other hand, being obese is shocking. All three men were in desperate physical condition in the United States, and one even had to have a tracheotomy since the fat on his body collapsed his windpipe, but we live in a culture where it has to go to that extreme before we care about physical health or will imply that people should change their behavior. China is often critiqued for public health decisions it has made, such as choosing to vaccinate tens of thousands rather than doing a single heart bypass surgery, but perhaps we have something to learn from them.
I've noticed similar things in my travels, as of late. In the last year I've been lucky enough to go to Montreal, Madison, Chicago, and San Francisco. With the exception of Chicago, all of these were places had significantly better food than an average American city, and the difference showed. San Francisco and Montreal are of course two of the best places in North America for food that is closer to the farm, and consequently healthier. Obesity seemed to be less of an issue, and from a personal perspective I have to say I felt fabulous eating the food in these places. Despite the fact that I eat what is a pretty "extreme" diet for where I live in the US (no dairy, no soy, due to food allergies; cut out most wheat, sugar, and additives to try to get over my allergies, asthma, and other problems), I still don't feel as healthy as when I go to California, where the food is much higher quality and more often locally grown.
So what do we do? If it takes traveling to or imprisoning oneself in a place that values natural food and health to feel better, it seems that incorporating those values into our own, somehow, would be the best bet. Now all we have to do is convince everyone else.
Tag. You're it!
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