Excellent blog describing what it’s like to live with an undiagnosed illness.
I’m on a roll today… tired of people telling me to not research my health issues. “Quit being a Web MD doctor,” they tell me, with an amused smirk in their eyes, as my obvious ridiculousness has apparently tickled their good senses. I’m such a silly goose, I know. It’s not just that whole thing, but also the frequent vibe I get from people that whatever is going on with me, I am obviously bringing it on myself. I’m tired of much of the attitude I encounter as I work my way through my medical issues, quite frankly.
Please, enlighten me. If you have suffered pain and symptoms that have interfered terribly in your life for YEARS, and you have done lifestyle changes and seen many medical professionals and had operations and taken medications and you were still not well, what would you do? Lay there watching Netflix, figuring some doctor will eventually get it figured out? Somehow I doubt it. You will want answers and you will want hope that it may eventually end. I am not a moron. I am a good researcher. I have learned how to discern types of information into legit or not, learned to observe the when and what of my symptoms, and I have realized that I am the only person privy to my feelings and symptoms. So, yes, I am going to continue to work at it, because at the end of the day, I am the true expert on me.
Furthermore, I am so sick of all the judgement I feel coming at me. My health issues are not my fault. I don’t think I deserve them. They are not a manifestation of a mental illness. Sorry, guys. When I suffered severe PPD and had a years-long mental breakdown, I can say that I did not feel like there was an infected piercing inside my rib cage back then. I was able to eat without it causing me searing pain daily. I used to be able to laugh without having to stop because it hurt. You would think that if my pain was caused by depression, then, logically my pain would have peaked with the depression. But my issues did not come along until I was out of the woods on all that stuff.
And yeah, I do live a first-world lifestyle. I do have an office job and a daily commute. I eat packaged foods and read on my tablet a lot. I drink alcohol moderately and have again started to use fluoride in my toothpaste. I am vaccinated. My lotions have parabens in them. However, none of the people in my life who also live this life have the issues I do. I’m assuming searing abdominal pain is not part of my colleagues day-to-day like it is for me.
But what’s funny is that when this all began, I was going through my “truther” phase – eating the “cleanest” diet of my life, drinking kombucha and eating mostly raw foods, and I had reduced my use of products that were not “natural.” I was in the best shape of my life, with a level of muscle tone I may never again hope to be able to re-achieve. I was meditating and I spent the beginning of this all wondering if it was my chakras being out of balance or something. Maybe my history of sexual abuse as a kid was coming back around to re-victimize yet me another time. Son of a bitch. I meditated on forgiveness and trying to balance out my spiritual vibrations. If I forgave harder, maybe my soul would stop wanting me to hurt physically.
But, I got sicker. I guess I wanted it; I was “asking for it.”
Three summers, this will be, three summers since I was able to have one day without feeling pain in my body. Happy fucking summer solstice, guys. I can barely remember what it was like to not need to take something for pain so I could go out and dance. Middle fingers extended to all of those people who suggested I need to push through it and exercise more and that will help me. Seriously, fuck you guys. The funny part is I loved exercise, and love the high it gives me. But it’s excruciating and takes me days to bounce back from physical exertion. Excuses, excuses, right? I would like to lay a dagger into your side and see how many miles you can run. Email me and we can set up something.
I truly do appreciate all of the suggestions on supplements and THC based remedies. I do not doubt that infusing my body with THC oil would make me feel better, not a bit. But it’s economically not an option, unfortunately, as bullshit as that may be. I am not in a financial or legal position to cook up a pound of weed. We can debate how screwed up that is until we are blue in the face but it remains my position. And I am afraid to mix in more chemistry in my body, in terms of supplements, until I know what is really going on. I don’t want to confuse things more, before I find an answer. I think that makes sense.
“Victim blaming” is a buzzword phrase we hear in society all the time. Generally it relates to rapes – yes she was gang raped at a frat party, but she was drunk and wearing this little dress, so we all mouth these platitudes of how wrong rape is, but goddamn, what self-respecting girl goes and gets hammered in a mini skirt at a frat party without expecting to be raped? She brought it on herself. Not officially, maybe, but this is the truth in most people’s minds when these things are in the news and we all talk about it over coffee in the relative safety of our homes or jobs and all of our careful choices. Not often do we contemplate the how or the why or how a group of young men feel ok about taking turns penetrating an intoxicated woman’s various orfices in a team effort. The seedy underbelly of humanity that no one enjoys examining… the idea that many people will see another human vulnerable, and hurt them instead of help them. So instead it is about how she should have made a better choice, well, then, they would not have been compelled to brutalize her.
I have felt victim blamed many times in my struggle with my health. It gets worse the more fruitless my search for answers becomes. The lack of a definitive diagnosis so far seems to justify the thinking that this is on me, that, by living my life in a way that is basically the same as most other people, it is somehow irrational for me to expect to feel about as well as most others. This must be something that has sprung from my poor choices, physically, mentally, energetically, spiritually. The implication of this is the idea that, when people do not live life in the right way, they will experience pain, unhappiness, and illness. To an extent, of course, this IS true. If you live hard and rough, don’t eat right, etc., yeah, you are going to suffer consequences physically. But what about all of the people who live within reasonable bounds and still get sick?
To me, I see the mentality of victim blaming to be the result of fear and good intentions, in a way. People want to believe they are safe, and so are their loved ones. The people who are sick are sick because they made the wrong choices, they did the wrong things, and now they are paying a fair penalty for it. It’s sad but it’s fair, and makes sense.
How many of us see the morbidly obese man or woman on the scooter at Walmart and shake our heads in disgust? I think we all have. You tell yourself, “Get up and walk, for fuck’s sake. No wonder you are fat and can’t walk around. You are lazy and disgusting trash. Now get the fuck out of my way. I need to find the mayo.” None of us know this person’s story or medical history, generally, and the one we patch together in our minds is a mosaic of assumptions. This is socially acceptable victim blaming. The purpose of this is to safely place ourselves and loved ones on the other side of that dividing line – If I make better choices, I will not be the one in the scooter at Walmart. And it is largely a logical point. Take care of yourself and odds are you will be healthier. But what if it doesn’t work that way, and one day, after making what you thought were mostly the right choices, you find yourself sick and in pain? And then you are the one in the scooter, enduring the haughty glances?
Welcome to my neighborhood.
It stands to reason that we must always try our best. We should definitely use the knowledge we have acquired about the human body and health and safety to maximize our lives the in the best way we can, as much as we are able to. But we must never assume that by doing these things that we are able to effectively circumvent any negative outcomes. This is simply not true. And when we come across people who are in the midst of these personal horrors, no matter how tempted we are to blame as a means of separating ourselves from the same fate, we must stop ourselves. Being alive is being vulnerable. We all have a death sentence and we all are eventually going to face some trouble or another. I am so sorry to tell you this, but even if you eat “clean,” live “clean,” meditate, spend time in nature, pierce the veil or what-not, you can still get sick. You can still acquire health conditions and pain and maybe even die from it. Sometimes a cell just goes rogue. Sometimes a blood clot explodes your brain, out of nowhere. No matter how healthy you may live, sorry, but you are dying.
This is my battle cry. Sorry, not sorry.
All of the disapproval, David Avocado Wolfe links, and judgement in the world cannot save you from this fate. Sooner or later, you are dead meat, as am I. So, forgive me if I seem flip and dismissive sometimes. I spent a lot of time trying to lead that clean and pure life and I still got sick. And now, in between shitty days and doctors and sometimes feeling sad for all I have lost, I try to enjoy myself as much as I can. It sometimes comes in the form of fruity smelling, chemically based lotions from Bath & Body Works, or a nice gluten-filled IPA beer, or, sometimes, a Big Mac (GASP). I truly have no idea why my hair is falling out and has been for the past several months and why I feel like I have an infected wound in my torso, or why almost everything I eat makes me want to vomit. I have to summon the hope in myself that maybe this will someday improve and keep reading, keeping feeling and thinking, keep trying to get to the bottom of it.
I don’t need people talking to me like I have no health literacy, have no self-awareness, or like I have no grasp on how to live a healthy life. I don’t need medical or nutritional or spiritual advice from my friends and family, unless I ask specifically for it. Sorry but I wish you all would trust me that I am smart and open-minded and I am working on it in my way. Don’t make me explain this all to you as a means of ending a hurtful conversation. Please don’t hate me or yell at me for telling you I need this. I need love and empathy and I need understanding. Don’t blame me because you are afraid of my fate becoming yours. Blaming me will not keep you safe. Sick people seem to be a walking manifestation of the vulnerabilities that come from having a human form but it doesn’t make it right to victim blame us. Life is scary. We can do better by being empathetic and kind to one another instead of judging and preaching. Yeah, maybe it is scary and it is tempting to believe that you hold the answers to how to make it end, but odds are, you don’t. Stop bitching at me, and give me a fucking hug. We are all in this fight for our lives together, aren’t we? Bring it in, my friend.
Eating right and living a healthy life seems to be more confusing than ever. As different ideological warriors battle it out on the internet, it can be very difficult for someone to know what to believe. Should you cleanse your gut with a juice fast or steer clear of GMO’s? Stock up on those Superfoods? Or is it all marketing and buzzwords?
As “Food Babe” and “Science Babe” duke it out on social media, Columbia University contemplates dropping Dr. Oz, and Kraft opts to remove artificial dye from their classic blue box of macaroni and cheese, food and nutrition and “wellness” is currently big news. McDonalds has announced major changes in the fast food restaurant business plan, seeking to eliminate antibiotic-treated chicken and milk from cows treated with growth hormones. Is food safety actually getting better, or is there a growing amount of hysteria and hype? How can we cut through the hype and get to the reality of what is really healthy?
I recently had a conversation about these questions with Dr. Zara C. Rowlands, Department of Human Ecology Chairperson at Youngstown State University and Registered Dietician since 1995. Dr. Rowlands has studied Human Food and Nutrition, Nutritional Sciences, and Dietetics and Nutrition for over 25 years. Here is what she had to say.
Elizabeth Lehman: There seems to be a growing amount of concern about wellness and what people are eating. How much of it are legitimate concerns and how much of it is hype?
Zara Rowlands: Oh, there’s a legitimate reason to be concerned about the diet and wellness because there is so much evidence that food relates to more than just physical wellness but also mental abilities, feelings of wellness itself; endorphins that we produce in response to certain foods that we eat, neurotransmitters that are affected as well. So there’s a legitimate reason for considering diet to be an important part of wellness.
EL: How are we able to sort through what is valid and what is not?
ZR: It’s about looking at who is putting this information out there – if they have an agenda or if they are actually qualified to be able to offer expert advice on the foods that we are eating. Sometimes the internet is one of the bigger sources of information for the “man on the street” and anyone really can put what they want to on the internet. There is nothing that says you actually have to have any license or that you have to have any qualifications. There are so many people that look at their own personal life experiences and their own interpretation of their own personal experiences and then they put it out there as if it’s a cure-all for everyone else, and that’s not the reality. It should be from credible sources. It should be from somebody whose profession it is to do physical, medical, and nutrition counseling.
EL: So, how about Food Babe?
EL: They say she is one of the most popular voices on the internet about nutrition. Are additives and preservatives really going to give us cancer?
ZR: Well, you see with a lot of these so-called “warriors” is that they really don’t have “health literacy”. They read information and they interpret it with the limited knowledge that they have on what it really involves and what the content is, and they come to these conclusions and then they shout them. If somebody is whispering to you about what is sensible and what’s true, you don’t always hear them because there is somebody else, shouting, “This is a miracle!” and that this is a cure and the “magic bullet,” and this is going to cure everything for you. And that’s what her followers are falling for. They are thinking, “Well, she is really beautiful so she must know what she’s talking about.” Most of it is genetics. She probably did not earn how she looks. So, with her telling you, “You can have perfect skin, and you can have a perfect body,” just do what she did, is not necessarily going to work for you. You have different genetics, a whole different experience. There is the nature versus nurture argument always, in terms of body image, size, and shape. You can’t really fight your genetics. You can make healthy decisions that will make your genes do their best, but there are some things that are we are just genetically predisposed to and we can’t really get around them. We see this a lot with diseases. If you have the genes that will predispose you to cystic fibrosis, you can eat as healthy as you want – you’re going to have cystic fibrosis. And it’s the same genes that say, “You’re going to have a big butt.” If you have extra calories, you will see people who don’t gain weight all over. They will gain weight on their bottom half, or they will gain weight in just the tummy section. Those are genetic predispositions. So, it’s not always possible to achieve perfection. And you sometimes have to take with a grain of salt what these so-called “warriors” are telling you because it’s not always fact-based. And, face it, facts are boring sometimes. And it’s not going to happen overnight, if you change your diet, it’s not going to happen overnight, you are going to see miraculous changes. You’re going to see it over time, and that’s what most people don’t want. They want the “magic bullet”.
EL: A lot of companies are starting to change the way they do things. McDonald’s just announce they are going to stop serving chicken treated with human antibiotics and they are going to stop using milk treated with the growth hormone rbST. Is this really necessary?
ZR: Yes. There are some things that companies do because they want to preserve their good image, and these are some issues that really have an effect on human health. If you are overusing antibiotics, you know that it breeds organisms that are resistant to the current methods of treating them. So there are reasons for making changes like that, good reasons for it. You know, if you can have a food that is naturally grown without pesticides and other things that can have an ill effect, then it’s always a better option. But sometimes, growing things without antibiotics or growing things without pesticides means you can put the population at risk. So, there is no one answer. It’s about making the best decision in that situation. Sometimes there is a good decision and sometimes it’s that someone is shouting so loud, they think it’s going to give them a better image if they make these changes.
EL: Are GMO’s really dangerous?
ZR: No – that’s the thing. It’s, again, not 100% dangerous nor is it 100% safe. There are situations where GMO’s … we’ve been eating GMO’s forever. And some of those GMO foods were brought about to increase crop yields, which is a good thing – if you have crop shortages, you want a better crop yield. You want foods or plants that are resistant to pests. You want plants that are going to grow faster. All of those are GMO initiatives. But when they start inserting genes into tomatoes, into things, genes that really don’t come from plants and animals, like a fish gene, then you might have some basis for concern. But there’s so much –the corn that we eat now bears no resemblance to the original corn. But the original corn was very hard to grow; the corn kernels were irregular, the texture of it was just mostly animal feed quality. So, there are some good things about GMO’s that you don’t hear about at all. You don’t hear about rice that now has a vitamin, a naturally good source of vitamin A in a food that didn’t. In a population where rice is a big part of their diet, and they don’t have good nutrient quality, then why not? Why not have vitamin A available to them?
EL: So it is not 100% good or bad – it’s a spectrum?
ZR: It’s a rule of nature – nothing is 100% good, nothing is 100% bad, but you need to be educated on where it’s appropriate and where it is not. And that’s the problem. These “warriors” who are out there spouting off that all GMO’s are bad and need to be labeled and they don’t understand that there’s a whole backstory to it. If you have to label everything that’s GMO, then you put the burden on the growers, so that’s going to drive food costs up tremendously for nothing sometimes. For no reason.
EL: So, with Kraft macaroni and cheese taking out the yellow dye, what’s that about? Is that stuff bad?
ZR: That’s, again, the trend of certain people considering it a bad thing, and they make so much noise that the food company then decides they’re going to eliminate it. But, you know, a lot of yellow dye is actually carotenoids – it’s a precursor of vitamin A. Would you say, “Don’t eat vitamin A, or don’t eat foods that have vitamin A added to them”? And if you think about the diet of children, they are so picky and they have these jogs that they go on where they only eat one food, and macaroni and cheese is one of those foods. And how do you make it? You put milk in it, and you make that sauce with that carotenoid color in it, and they like it. So what’s wrong with that?
EL: OK, so, juice fasts… do they really cleanse toxins, are they at all helpful?
ZR: No. That’s the problem – we have a liver and we have kidneys. Those are the organs where their job is to detoxify you. So, your gut – if you use those juice fasts, sometimes the way they work is they give you diarrhea. And I don’t know that diarrhea is a good thing, because it dehydrates you. And these juice fasts; they really do nothing for you. Your gut replenishes itself every two to three days, so it’s not a lasting thing. It’s not like you do this juice fast and say, oh, I’m good for two years, or I’m good for five years. It’s not going to have that much of an effect you; it’s just probably going to dehydrate you from the diarrhea. And the thing is with fasts is they’re not good for everybody. If you have certain chronic diseases, fasting is not a good recommendation for you.
EL: So you want to at least check with your doctor if you’re going to do it?
ZR: Yeah. And if your liver is functioning well, and your kidneys are functioning well, you don’t need any cleansing other than that.
ER: So what can people do if they really want to “eat clean” and be healthy?
ZR: Again, there’s no right or wrong answer. It’s genetic, which foods are really beneficial to you and what are not. Look at different parts of the world, there are some people who can eat whatever they want to and their weight never fluctuates, people who can at as much saturated fat as they want and their blood cholesterol never goes up. Some of it’s genetic, but, again, if you want to eat healthy, a diet that is heavily plant-based with some good high protein sources is usually a better diet. So, “clean eating,” that’s another term that really has no legal definition. What does clean mean? Does it mean you don’t pick food up off the floor? The way it’s interpreted sometimes is having a lower impact on the environment. Or there is this “whole foods” movement. And all these things are fashion terms – fashionable “in” things that make you seem cooler than the rest of them. But there’s no real definition for them. You look at marketing terms – they say “superfood.” There’s no superfood. There are foods that have nice amounts of certain nutrients, but even that you could actually over-do. And then it would not be good for you.