Wednesday, August 20, 2014

Hidden prerequisites for obvious psychological tasks

This is my blog where I hope I'm fairly anonymous, and I basically develop my ideas over time without having to present them in a fully developed form.

I'm developing an idea, from my personal experience, of the following phenomenon:

Sometimes people are aware that they need to do something that they don't currently do. Maybe they need to see themselves as individuals, take care of themselves, have higher standards, put themselves out there, etc.

However, there often seems like a block, where they just can't do it, no matter how hard they try. It just doesn't seem to be possible. People can feel ashamed of themselves for not being able to do this thing they know they should do, that most people do.

There might be a different way to look at it. In my experience, this situation usually means that there is *something else* that the person needs to do first, as a prerequisite for doing the other thing. Until they discover this lower-level task, they might not be able to do the thing they set out to do.

Here are some "prerequisites" I've identified in my own life:

  • Before being able to know what I want and desire, I have to be able to feel my body and feelings in the first place
  • Before being able to relax and do fun things, I have to cultivate a feeling of safety (I like the exercise in Psycho-Cybernetics where you imagine a really safe environment. even a beach doesn't feel safe enough to me)
  • In order to be able to feel things at all, you have to feel your anger first to remove that block to feeling
  • In order to be in your body, you have to feel your birth trauma first (before the nerves open up and you can literally start to feel more of the meat and muscle of your body, rather than just the minimum)
  • In order to make your life good for yourself and to see yourself as someone worth making happy, you have to be IN your life, to have landed there, and that seems to require having felt any birth trauma (after doing more birth trauma work and trauma releasing exercises, I felt like I was landing in my body as though I had parachuted in, and that I was really "here" now, rather than having one foot somewhere else)
  • In order to relax, you need a lot of your bodily processes to be going fairly well, such as not having too many chronic infections, having enough minerals, etc - otherwise you'll be distracted by being spurred to look for whatever you are missing (this is a GOOD thing- you don't want your body to relax and stop looking when you need something you don't have, in the wild)
 In general, I'm very skeptical of approaches that assume the body is just dumb and that it needs to be corrected by force, e.g., to be MADE to relax or to be MADE to see itself as a worthy individual. I think these things happen naturally when prerequisites are met.

A lot of the prerequisites seem to involve giving the body large doses of things it tends to need in general:
-Vitamins and minerals and quality nutrition
-A safe enough space to feel and work out its trapped emotions
-Respect, hugs, social esteem, acceptance

The examples of peer-run respite, compared with psychiatric hospitalization and pharmacological treatment, serve to illustrate this contrast.

In the first case, you are giving people very basic things they need: acceptance, belief, a safe space, rest. In the other, you are forcing behaviors from a top-down perspective, or even forcing the behaviors chemically. While the latter might give more dramatic and controllable results, the former approach is more conducive to long-term well-being.

In the end, it's my belief from my experience that the body is REALLY, REALLY smart. It's hard to compete with millions of years of evolution. The whole scientific/rational thing has only been going on for a few hundred years, and it was only recently that we realized that vitamins existed or that plant microRNA existed.  Yet somehow without any of this rational knowledge, the humans' whose genes we have were able to survive in sometimes very difficult environments. Animals survive with oftentimes much less awareness and intellect than we have. There's some sort of very powerful machinery inside of us that draws us to things that are good for us.

Sometimes the main thing getting in the way is rationality and social conventions - our assumptions that this thing "can't" be that important.

For example, feeling the entirety of birth trauma has felt critically important to me for years -- so important that I found myself being self-sabotaging at times in order to create traumatic situations that would help me to feel this initial trauma. In some cases, feeling this trauma seems to be more important to people than life itself, exemplified by the way that many suicides parallel people's birth traumas (see research from Switzerland). Taking this innate feeling seriously - that I need to feel this trauma (and the safest way is just drawing up the feelings in a safe place or doing trauma relasing exercises that stimulate trauma release by triggering some of the body's normal ways of expunging it) has been incredibly valuable to me. I would have missed out on this if I hadn't gotten to the point that I take my innate urges very seriously, even if they contradict social assumptions that one's birth "can't" be that important or have such long-lasting effects. (If we just consider epigenetics and critical periods, OF COURSE birth experiences and large drug/Pitocin/epidural exposures at birth can have long-lasting effects.)

Excellence for its own sake, and market research

Now that I'm doing some data analysis for work, I'm realizing what a strange commitment I have to the principles of doing good work.

It's almost like a religion to me, that it matters to find results that are REAL and not just that seem real. I want to find things that are true and not just report things for the sake of reporting something.

It's interesting that I have this commitment to quality, even aside from what will get me results at my own place of employment or that will make the

It's interesting about making the customers happy. Yes, it can make them happy when they get really interesting results that I can basically prove are true from many angles. But they are also made happy by simple results that are easy for them to work on without thinking about it too much. There can be politics at their offices too, and they are trying to look good to one another.

I think I'd like to get into meta-research in market research eventually, such as looking into what market research practices actually contribute to success, or studies of respondent %s, or just of what we are doing that's accurate and what's bs. Because I really hate it when people make efforts for no reason at all. Having so little energy due to illness has made me extremely protective of effort, in a way that can sometimes make me a better employee. I really want to make sure that everything we do is worth doing.

Wednesday, July 30, 2014


I wonder what degree of stress it causes to highly gifted people that it is hard for them to talk about or own their differences or identities without seeming elitist.

It is so nice to be in environments where those differences are recognized but not idealized, praised, or made to be strange.

Why does one have to have one of the only identities that's really, really not respected if you are proud and clear about claiming it?

It must be similar to having some other identity that is not very accepted at present.

I think there is something along the lines of "IQ-ism" that goes on, where people with high IQ are shamed or made to be freaks or scolded for mentioning it.

It's really not better! It's a minority. It is not better. It doesn't make life "better."

Another difficulty with this identity is that in order to claim it, you're expected to keep performing it. It's an identity that requires constant performance. Suppose you get sick or you're underemployed - in the public eye, you no longer have this identity, even if who you are hasn't changed.

Hard to recover for its own sake

It seems like it's difficult to achieve health for its own sake.

Because when people try to get better simply to "get better," the implicit goal is to get better for the sake of other people, so that one will no longer require the care or treatment or special treatment that a sick person gets.

Many people assume that "getting better" is better than being sick, but I'd like to encourage people to examine their assumptions about why that would be. I would guess that chief among them are reasons related to fear and not wanting to impose on others, or else financial fears, such as needing to get better so that one will not require expensive diets or special treatments.

I don't think fear is such a great motivator for health.

It seems that the body can get things together in order to feel better if there is a good reason it believes in that will be more rewarding than whatever it is doing now, such as a relationship, a major goal or dream, etc.

Perhaps this is built into us as a social species - that if our bodies sense that we are aiming to make a contribution or to get some major interpersonal or social or relational reward, that it's worth putting things together so that we can succeed at that. But if we aren't, we might as well languish in autoimmunity and low functioning, since we don't seem that useful or connected to the community. And the health of the community might be built into our genetic expression programs just as much as our own health. Genetic expression doesn't always favor the individual and in some cases seems to be designed to dispose of individuals who aren't that important or beneficial to the group or who aren't that healthy; to get them to self-destruct.

To counter this, we might need to detoxify, feed ourselves high-quality nutrition (or even high amounts of whatever is missing, to counteract deficiencies), and do things that gain us recognition and demonstrate that we are contributing in ways that are valued.

Tuesday, July 29, 2014

Overwhelming absorbing challenge is nice

I'm realizing that a big issue I dealt with in college is that I love being in over my head and having so much challenge happening that it absorbs me, and I really dislike being bored.

I loved that feeling of being challenged and overwhelmed so much. Unfortunately, by the time we got to finals I was often really struggling.

I've been good at just figuring things out; for instance going to a Spanish-speaking country and taking two weeks of classroom lessons and then hanging out with people who spoke only Spanish and speaking only Spanish with them for long periods of time, getting by with the amount of Spanish I knew from the lessons and from context. I loved that challenge.

I also liked working at a coffee shop where I'd often be juggling multiple orders at once.

Currently, I like cooking six or so different items for dinner. It's fun to be so absorbed in the tasks.

Friday, July 25, 2014

Positive thinking only works if you have the right conditions to start with

I just wanted to comment on something that I think I touched on years ago.

Frequently healthier people will tell sick people they just need to change their outlook or change their thinking or something in order to feel better.

However, they fail to recognize that approaches like this only work for problems to a certain degree, if the brain and body are in sufficiently good shape.

After a certain point, if you are so toxic and glutathione-deficient and low in ATP and low in vitamins and minerals, thinking is going to be limited in what it can do. Because (surprise!) thinking and positivity and all those things have to work through physical mechanisms at some level, such as hormonal changes or brain changes, and if you're extremely depe

It's like people telling you that all you need to do is push on the pedal harder in order to get your car to go faster, when your car is faltering because it's running out of gas. That approach (pushing harder on the pedal) only works if other conditions (such as having adequate gas) are met.

Different people might see different balances of how much mental versus medical/physical approaches work for them. Some people might get a lot of benefit from meditation or positive thinking, or be able to pull themselves out of problems that way, and that's great for them. But for my own body, the situation seems to be so dire in many ways that the main things that have helped me have been physical things like removing myself from certain toxins or providing certain missing ingredients. Doing something right along those lines can do more for me in a few days or weeks than years of positive thinking or trying to control my brain would do.

Thursday, July 24, 2014

Working on my book

I've been getting my book into a more final form.

It's been interesting for me, since the process this time around mostly consists of writing things that, once I write them, are obvious, but which I haven't heard other people point out. These are things that I only identified since I had a few conversations with other people in this position and realized I wasn't the only one who felt this way. Or things that these people suggested that I hadn't thought about before but realized were true.

It's very relieving to calmly write obvious things. This book isn't taking some controversial stance on a question that's been debated ad nauseam. It's just saying things that people haven't taken the time to observe or say but that are obviously the case. Why haven't people said them? Too much stigma involving the whole thing, maybe? Various stigmas and prejudices and types of invisibility?

- - -

I've been doing the book this whole time as a treatment, since I thought it could create a bridge back to my prior life or prior identity. Currently I'm using it as a way to have some consuming project or identity that gives me pride. It's working; I am feeling better overall, although a little wired.

- - -

The Bartonella and Lyme treatment continues. I've added EDTA as a biofilm buster. Every now and then I get a brief few seconds of pleasure that reminds me of how life used to be. I'll actually feel my emotions feel different if I see something beautiful or listen to a good song. This is how it should be. Maybe I'm getting some endorphins back.

I'm also getting dermatographia again and these weird hot red rashes on my knuckles. Very strange. Very bright red, blotchy rashes there. Just there.

Monday, July 21, 2014

Mansplaining in chronic Lyme and ME/CFS

Is telling female patients they don't know the cause or origin of their symptoms a form of mansplaining? I think it is.

Even if done by a female doctor to a male patient, it still feels like mansplaining.

See this tumblr (Mansplained) for examples of mansplaining.
Issues it happens over in chronic Lyme and ME/CFS:
  • What people should be doing for treatment (or the lack thereof) - e.g., you should just work on your outlook and not take supplements (thanks, person without the disease for knowing better what to do than someone who researches and compares treatment approaches!)
  • What causes symptoms - e.g., you don't realize it, but your symptoms are caused purely by anxiety (thanks for presuming knowledge of both how I experience anxiety and how I experience these symptoms, and thanks for forgetting that thousands of other people have these same symptoms!)
  • What chronic Lyme disease or ME or CFS are - e.g., even if the person does not have the disease or specialize in treating it, they assume they know more than the person who has it (thanks for knowing more than I do, from a newspaper article or two, about the disease I have and you don't!)
  • Differentiating between physical and emotional symptoms - e.g., telling a patient that while certain symptoms are physical, others are emotional, without getting the patient's opinion

Tuesday, July 8, 2014

I'm learning a lot lately about all of this, so some of my posts might seem to contradict one another.

I'm starting to see it's possible to hang onto feeling, to exert feeling, to assert feeling, to say I FEEL.

I saw a friend writing about her mold avoidance journey that started recently by necessity:

It's great to see someone writing about how it really feels and what it involves.

But I'm also seeing that being in a feeling state doesn't make people more human. Being alienated from one's feelings is ok too. IT's still being human. Even not being able to feel many feelings at all is part of the human experience.

Is it really better to be in a chewing-cud, relaxed, socializing non-traumatized state? It's different but not necessarily better. It depends on the circumstances. If things truly are safe and the state is an unneeded hangover, then sure, get out of the scared state. But there are times and circumstances where being sort of dazed and unaware are better.

Monday, July 7, 2014

The other 1%

We hear a lot about the 1% who make the most money or have the most money.

There's another 1% who are also lucky. It's the people who are in the top 1% for how healthful their lifestyle is and how much of a positive difference they're making with their health by how they live.

This includes people who are doing much of the following:
  • saunas
  • ozone therapy
  • genetic bypass for methylation and detox gene mutations
  • coffee enemas
  • organic food
  • green smoothies
  • frequent exercise 
  • Reishi
  • superfoods
  • blended soups
  • juicing
  • Autoimmune Paleo protocol (AIP) 
  • bone broth
  • gelatin 
  • Bulletproof Diet
  • gut healing
  • etc. 
Unfortunately, it's mainly people with poor health who learn about and get into these things that could benefit anyone (just as it's mainly people without much money who get good at saving money and doing things that could benefit most people financially).

But it's kind of a privilege to be in the health 1%. It's nice to take credit for one's research and efforts paying off in a much better body, mind, and life experience than one would be having otherwise.

Granted, being in the health 1% tends to require some other privileges, including internet access, adequate money, some sort of assistance or job, etc. 

Countering neuroimmune illness stereotypes with art and expression

Every type of disability has its particular stereotypes, some of them involving assumptions that people must not be sexual beings, or that they are in need of pity and charity, or that life must obviously be worse with the disability rather than just different.

People with neuroimmune disease and sensitivity diseases including CIRS, mold illness, MCS, multiple chemical sensitivity, CFS, ME, myalgic encephalomyelitis, chronic Lyme disease, fibromyalgia, etc. - deal with some very potent stereotypes.

Stereotypes this group deals with:
  • Psychosomatizing - so out of touch with how their bodies and emotions work that they think symptoms are coming from one thing (mold or a chemical) when they are actually coming from another thing (an emotion).
    • Stereotype: Unable to properly interpret or report on one's bodily workings or emotions.
  • Too sensitive - the assumption is that these people are taking minor annoyances that are part of daily life for most people (such as fatigue, being mildly bothered by certain scents, etc.) and misinterpreting them to be serious or problematic symptoms. The assumption is that these people just need to "buck up" and deal with the annoyances.
    • Stereotype: Having a different and more self-pitying and avoidant reaction to normal life annoyances.
  • Avoiding life - Patients are often accused of not wanting to participate in life and inventing illness to get away from the demands and risks of regular life. 
    • Stereotype: Intentionally staying away from life.
  • Out-of-touch with one's feelings - Saying that a person is experiencing symptoms that aren't "real" is essentially saying their ability to perceive their bodily feelings (including emotions) is so disordered that even people outside of them can notice the defects, and can tell them what they are actually feeling or where their symptoms are actually coming from. 
    • Stereotype: Poor at sensing and interpreting feelings
  • Inhuman or less-than-human, or criminals of the social order - For some reason, the concept of psychosomatizing is very tied up with dehumanization in our society. Perhaps because feelings are so critical to existing in communities as a person, and perhaps because we have such taboos against shirking one's duties and malingering, those who are suspected of a) not being able to correctly interpret their feelings and b) malingering are subject to a very intense degree of dehumanization. These people are threats not just because their bodily-emotional feeling apparatus is claimed to be malfunctioning, but also because they are suspected to be tricking society or loved ones into giving them more than they deserve.
    • Stereotype: Inhuman and a potential threat.

How could art (widely conceived, including documentaries, books, videos, podcasts, poems, etc.) help to counteract these stereotypes?
  1. Stereotype: Unable to properly interpret or report on one's bodily workings or emotions
    1. Could use art to demonstrate that patients are often exquisitely aware of their body workings as well as their emotions, in ways that are too subtle or precise to be dismissed.
  2. Stereotype: Having a different and more self-pitying and avoidant reaction to normal life annoyances.
    1. Could use art to show that patients' actual reactions to their life circumstances are often different from the stereotype. Many times patients embrace their challenges and learn from them and grow in profound ways. They often become far more tolerant and enlightened. Hearing or seeing patients talk about their actual approaches to life including living with these illnesses could help to show that avoidant and self-pitying are not the ways to describe it - better would be pragmatic, open, perseverant, and using it as a tool for learning.
  3. Stereotype: Intentionally staying away from life.
    1. Patients could express how much they are involved in and try to be involved in life. The lengths to which they go to be able to be healthy or to do things they want to do. The enjoyment they get from what they do. I just took a road trip last weekend, despite going through Bartonella herxing, and it would be great to write about that trip. Life and living are often very high priorities for patients - that's why they do the treatment.
  4. Stereotype: Poor at sensing and interpreting feelings  
    1. Expressing feelings through art helps to show that, in fact, many of us are very good at sensing and interpreting our feelings.
  5. Stereotype: Inhuman and a potential threat
    1. Art helps to show people's humanity, and it's hard to feel as threatened by people who are vulnerably sharing their feelings and messages through art. It's easier to see our shared humanity when they express feelings that the viewers have felt too.
I'm glad some people are making documentaries, and it would be great to see more of that!

More of all of these:
  • T-shirts
  • YouTube videos
  • Documentaries
  • Satires
  • Comics
  • Graphic novels
  • Write for Thought Catalog, Good Men Project, etc.
  • Write to student paper at your college or former college
  • Flags
  • Songs
  • Poems
  • Photographs
  • Collages
  • Short stories
  • Novels
  • Autobiographies
  • Journals
  • Semi-fictional books
  • Playing cards
  • Who knows?

Many forces of dehumanization of patients

Many ways patients experience dehumanization:
  • Some dehumanization happens from a bodily perspective. You lose blood flow to important brain areas. You lose memory and the ability to think during stressful situations (such as arguments or times when emotions are on the line). You get lower levels of many of the hormones that contribute to the human experience, such as oxytocin, thyroid hormones, endorphins, 
  • In many ways having biotoxin illness, CFS, chronic Lyme disease, CIRS, ME, and similar illnesses is like being on withdrawal meds or being in some sort of prolonged drug withdrawal, except the "drugs" one is lacking are normal human hormones that contribute to feelings of well-being, bliss, connection, socializing, etc. 
  • Some dehumanization comes from suddenly occupying a lower status socially and in one's immediate circle, whether from decreasing or stopping work, having fewer abilities, having symptoms that are annoying for others, or simply claiming to have a contested experience. The drop in privilege is palpable.
  • Some dehumanization happens from experiencing prolonged trauma with a relative lack of safe places. It's difficult to go through the traumas of these diseases, such as losing all one's possessions, moving, break-ups, losing careers, etc. without a safe place where one's feelings are seen to be normal and a healthy reaction to one's circumstances (rather than an over-reaction to nothing, or wallowing in and creating one's illness by focusing on it).
  • Patients experience dehumanization by not being taken seriously. One effect of dehumanizing others is that it becomes less important to take them seriously or to believe what they say. It also has the effect of making it harder for the patients to express their humanity, if the things that contribute to who they are (such as their reports about their bodies, their assertions about their feelings) are dismissed. It's said that treating people like they are crazy can be crazy-making. Being in such an environment can provoke people to feel crazy or less-than-human, if what they are saying is consistently being brushed aside.
  • I think most patients will be aware of the feeling you get in situations where you know you're not being taken seriously but there is nothing you can do to change it. It's like being rendered effectively mute. The effect on patients is to take away their comfort with a large part of their expression. They can no longer count on what they say making it through to other people. In fact, simply sharing their experiences can become dangerous for them (in many situations, people turn on patients when they express that they are reacting to something or having worse symptoms).
  • Patients are also dehumanized by having their stories left out of mainstream publications and media.

Supplements as prosthetics

I've been thinking about prosthetics, which are a very visible sign that a person has a disability but is taking advantage of tools that are available to support them in doing more things.

Apparently seeing people using prosthetics is very inspirational:

Lost leg, not heart (Pass It On)

I'm thinking that supplements could also be seen as prosthetics, in the sense of genetic bypass. Some people have "crippled" detox enzymes, and things like methylfolate and high-dose hydroxocobalamin or methylcobalamin can function as detox system prosthetics.

Maybe lots of us should take photos of ourselves with a picture of our detox gene profiles (from with a backdrop of our supplement shelves. And then, of course, add an inspirational saying. Or if you don't want to share your actual genes, then just a photo with your supplement "prosthetics."

For many people, supplements are not something added to the diet to prevent deficiency; they are actually used as prosthetics to prop up detox systems that would otherwise be overloaded or inadequately functional.

Would it be inspirational to see a canary patient next to the supplements (or tent in the wilderness) that they use as a "prosthetic" to prop up their methylation or biotoxin detox genes? Would it be inspirational that despite these handicaps, they choose to use tools available to them from technology and shared patient knowledge to help themselves to be more active and mobile than they would be otherwise?

I know someone who uses a prosthetic leg, and it's not that different from using supplements or mold avoidance - there's some adjustment in finding what works for that individual person, and there's continual updating (I never knew how much it took to fit prosthetic legs properly or to keep the liners clean and comfortable), and it's expensive (prosthetic legs can be $10-20K; insurance usually covers them), and there are improvements over time in both prosthetics and supplements - but both the supplements and prosthetics enable people to supplement what would otherwise be handicapping lacks of something in their bodies and to have greater access to modern society, work, fun, etc.

My methylfolate serves a similar function to this person's prosthetic leg.

I think that the "detoxification crip" are an emerging group - those who are disabled not in an obvious external way, but those who have detox gene and detox function differences (some of which can be epigenetic or related to adverse life experiences as well).

Their access to many spaces is impaired by the presence of mold or chemicals there, similarly to how people in wheelchairs' access to some spaces is reduced.

The types of accommodations they want to fight for are wide-reaching, ranging from having people be scent-free or at least not use the most obvious/noxious scents (like air freshener, fabric softener, toxic perfumes), to having agricultural companies stop using the fertilizers and pesticides that can hurt these people. They also might want to fight for access to clean food. This isn't such a different fight from people fighting for wheelchair-accessible restrooms and buildings.

There could be cross-disability coalitions where we fight for a world we can all access - Ideally we would be able to travel, go on planes, stay at safe rooms at hotels, have safe access to hospitals, date, go to restaurants, go to most areas in the country or world, eat affordable food, etc. Achieving that takes reducing or removing unnecessary chemicals from many areas and creating especially safe spaces and awareness about how to safely accommodate these disabilities.

Thinking about it in terms of disability access, a topic that is already very familiar in the culture, helps to make it more clear and acceptable and (perhaps) beyond debate about what people need to do in terms of using prosthetics as well as making the world more accessible for genetic detox canaries. We wouldn't argue that people shouldn't use wheelchairs or that buildings shouldn't be accessible; so why should there be any debate about people with EI or detox problems using supplements or fighting for accommodations and changes that will make the world more accessible to them?

Sunday, July 6, 2014

I am tired of...

What I am tired of:

  • I am tired of feeling cut off from respectable or intellectual society, where the world of people who read the New Yorker and good books can also be prone to thinking I'm not one of them if I have these diseases.
  • I am tired of feeling I must by necessity be "anti-scientific" if I claim to have the conditions I have.
  • I am tired of being told that all these other people are aware of my psychological problems that are contributing to or even causing my diseases, and that I should submit and give in to their views (when in fact I see they are mainly expressing stereotypes that most patients hear).
  • I am tired of being seen mainly as a debate or piece of evidence in a case about whether these conditions exist or not. 
  • I am tired of having the unique things about me hidden so deeply under this debate that they are rarely seen, and if seen, are not seen in their actual magnitude. 
  • I am tired (honestly) of having my actual problems and areas where I could stand to grow ignored because they don't fit the stereotype of what a contested illness patient's problems are supposed to be.
  • I am tired of being placed involuntarily on these "growth tracks" that other people have mistakenly assigned me to, like being placed on a treadmill and having to walk whether one wants to or not - where other people decide what they think must be wrong (stereotypes based on perception of my diseases) and command me to grow in these ways I don't need to grow while neglecting areas where I need to work.
  • I am tired of feeling like my former high-achieving persona was a fluke and that I can't claim those accomplishments because I'm not the same person anymore. 
  • I am tired of people telling me they don't know where my IQ went, if I can believe things that I experience related to my diseases (e.g., that mold cross-contamination can happen). 
  • I am tired of standing in for people's projections about the overly-sensitive, life-avoiding "Other."
  • I am tired of having very little literature or community or scholarship available to people in my situation, other than the pabulum like "It hurts when people don't believe you" and "some disabilities are invisible." 
  • I am tired of picking up on ways that I'm not being taken seriously, and then being told I'm imagining it and that there is no problem at all. 
  • I am tired of dealing with massive amounts of unintended micro-aggressions in therapy that sometimes stick with me and hurt my feelings for days, and being told nothing's wrong and that I'm getting upset over nothing if I bring it up.
  • I am tired of automatically exposing myself to a slew of assumptions and views about myself if I identify as a patient with these diagnoses. 
  • I am tired of my brain inflammation symptoms being misinterpreted as a level of childhood trauma or mental illness out of proportion with what I actually deal with. 
  • I am tired of being lumped with people I'm not actually that much like. 
  • I am tired of the perseverance and stamina and intelligence and creativity I've shown most of my life being erased since they don't fit the stereotype of what a patient with my diagnoses is like (even the good stereotypes). 
  • I am tired of being in a hostile world that, if the right circumstances came together, could kill, further disable, or seriously hurt me me or deprive me of treatment with no legal consequences.
  • I am tired of feeling like the world does not belong to or include people like me.
  • I am tired of the severity of my symptoms being taken as even more of a reason not to believe them, if I experience a given symptom to a greater degree than even most patients with these diagnoses.
  • I am tired of living in "enemy territory." 
  • I am tired of mixing love and compassion and connection with getting hit randomly by stereotypes about people with my diagnoses - having these same things happen sometimes in the same conversation or same relationship. 
  • I am tired of feeling that my main role in life now is simply to erase a disease that exists and that is very serious, and in the meantime to erase the symptoms, and barring that, to erase my feelings of indignation and frustration.
  • I am tired of being told that "good" patients with these diseases accept the stereotypes with a smile and without a murmur, and that good patients swallow the well-meaning advice happily like honey.
  • I am tired of being told that "good" patients are quiet, grateful for anything they get, docile, non-accusatory, non-blaming, - they absorb all the injustices into themselves and throw away their productive lives rather than put the blame on one other person.
  • I'm tired of the misunderstanding of these diseases being so widespread that there are few safe places and few safe people, and it's hard to leave an unsafe situation or people who don't understand because there are so few people or places to replace them with.
  • I'm tired of being told essentially that I'm not the same person I used to be. 
  • I'm tired of being in situations where I'm standing in as the "crazy lady." 
  • I'm tired of doing things I don't want to do just to show that the stereotypes don't apply to me. 
  • I am tired of being assigned a bad role in the overall human play.
  • I am tired of absorbing projection I don't want to absorb.
  • I am tired of having nowhere to be truly heard. 
  • I am tired of being muzzled because most of what I say goes through a filter of "this person also said these possibly untrue things so it's not clear whether to take her seriously."
  • I am tired of being told I'm too sensitive for caring about any of the above. 

Burden of responsibility on patients with doubted diseases

When disease is doubted, it becomes in effect the responsibility of the person who has the disease, without much responsibility levied on other people.

I think that's one of the big differentiators between doubted and respected disease - the amount of responsibility the patient shoulders.

In doubted disease:
  • Doctors don't have much responsibility to treat it or to figure out what is going on if they conclude it's in someone's head or that they are claiming symptoms they shouldn't be having.
  • Families don't have as much responsibility to help financially or to give emotional support if they can point to controversy about whether the disease exists.
  • Other people don't have much responsibility for absorbing the person's pain or helping them through their processing or suffering. 
  • Researchers and funding agencies aren't responsible for working on better treatments or cures or understanding the disease process.
  • People don't have to worry too much about what they say to the patients or whether they offend them (a major concern with respected illness or disability), since "we all know" the patients are off their rockers and it doesn't matter if you offend them - in fact, offending them might stimulate them to "choose to get over" their disease. 
  • People who encounter the patient don't have the responsibility to share that person's pain with them in an empathetic way or to respect their wisdom from their life experience - instead, it's a free-for-all where they can think or say whatever stereotypes or rude comments they like, and if the patient gets upset then the patient is being "too sensitive"
  • All in all, the responsibility for staying alive and mentally well falls on the person with the disease.
The person is responsible for:
  • Trying to exist in environments where their symptoms are not supposed to exist. Dealing with disability in environments where most people are not aware of or familiar with the particular disabilities (including fragrance sensitivity, pesticide sensitivity, hyperacusis, sensory issues, rage, etc.) Trying to walk the line between mentioning symptoms when necessary but also trying to pass/make symptoms invisible.
  • Absorbing the effects of other people's handling of the illness. Suppose other people say mean things or put the person down or doubt the disease. The patient is responsible for absorbing these aggressions and micro-aggressions. 
  • Researching treatments and educating themselves to essentially a doctor-level of knowledge about their condition and how to manage it. 
  • Somehow paying for treatments, a clean diet, supplements, doctors, moving, replacing items, etc. 
  • Motivating themselves and resisting, with very little community support, a massive structure of oppression that dehumanizes these patients ranging from barring access to treatment to frequent micro-aggressions.
  • Eating a stunningly clean, healthy diet that might not taste good at all.
  • Coping with symptoms while not talking about them much.
  • Motivating themselves to continue taking care of their bodies.

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