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: http://mypostapocalypticlife.wordpress.com/

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 geneticgenie.org) 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.

Tuesday, July 1, 2014

It must be hard when people don't listen to you when you tell them their illness must be psychological.

Not as frustrating as having a medical condition and not getting treatment and support/cooperation.

It must be frustrating to "know" exactly what is going on with the person, exactly where their mind is going wrong, exactly how they are expressing something deeper or emotional through the symptoms they "think" they have, and for the person not to listen and to get angry when you try to explain it to them.

Not as frustrating as having a medical condition and not getting treatment and support/cooperation.

How privilege factors into discussions about doubted diseases and whether illness is psychological

Mistaking a physical disease for a psychological situation has far more negative consequences for the patients with the disease than for the caretakers. The patients could go without needed medical treatment, be institutionalized or put in psych hospitals, be emotionally abused, or die. This is why patients tend to fight against the mis-characterization of physical diseases as purely emotional.

However, mistaking a psychological situation for a physical disease would have more negative consequences for family, caretakers, etc., than for patients. If a person has a severe psychological issue that prompts them to make up symptoms, then family or loved ones who go along with it would be involved in providing unnecessary accommodations and paying for unnecessary treatment. This is why anytime the issue is raised that physical issues could be psychological, many people seem to assume that the worst possible thing would be for the able-bodied people in the patient's life to be "tricked" into providing medical care, and patients' symptoms are often assumed to be "psychological until proven medical."

Not only that, but patients' proof they provide that their symptoms are medical (lab tests, doctors, articles) are scrutinized heavily. Does the lab give positive results to everyone? Is the abnormal result in question mean anything anyway (I've had people say this about my TGF-beta which was about 4 times the maximum level it should be, so apparently massive deviances from the norm are not enough to forestall this criticism). Are the doctors quacks? Do the doctors think everyone has the disease?

It's not simply wanting to do due diligence to make sure the person is accurately diagnosed and has a licensed physician or lab tests. Instead, it's often an extremely high bar for seeing a disease as real, and an extremely low bar for will be counted as evidence that the person's disease is "in their head."

(For example, mental symptoms that are known and normal parts of the disease, such as irritability for chronic Lyme or mold illness, are often counted as "evidence" that the disease is psychological, when they could just as easily count for evidence that the person has a physical disease with that symptom.)

I've been thinking about how and why this happens. How can it be that people are far more concerned about potentially providing a little unneeded care to someone, than about a loved one of theirs going without medical care when seriously ill? Shouldn't the latter of those be the main fear?

Perhaps this has to do with privilege. Patients are seen as having less privilege than able-bodied people, so the needs of the able-bodied family members or professionals seem to take precedence.

Our society generates the idea that it's worse that an able-bodied person might be "tricked" into providing medical care to someone who is purely psychologically ill than that a disabled person/patient would be denied medical care due to prejudice.

(Compare this with the idea that it would be worse if straight allies of LGBT groups didn't receive enough appreciation, versus the risk of not having enough events or visibility for trans* or bi groups. In the book I read, it was mentioned that trans* people complained about having only one day of awareness, versus a week of Ally Appreciation Week. The privileged allies/acquaintances/loved ones sometimes assume and are treated as though their needs matter more than those of the discriminated group in question.) 

This attitude (of being more concerned about providing treatment that's not needed than not providing treatment that's needed) privileges the needs of able-bodied people over patients. It subtly spreads the notion that able-bodied people are more important than patients.

If you notice in my list of Recognized illness privileges, one issue that people with doubted diseases deal with on average more than people with recognized illnesses is discourse about the illness that privileges the needs of the able-bodied people over those of the patients.

With doubted illnesses, people sometimes act like the illness is harder for them than it is for the patient, often to a greater degree than with respected illnesses, partially because doubted patients are so deprived of privilege that the "background radiation" of society suggests that small inconveniences to the able-bodied people's lives are more important than whatever the maligned patient could be dealing with.

In fact, in some cases, the mere confusion that the non-patients experience about whether the doubted patient is actually sick is magnified to the point it's considered on par with the suffering experienced by the patient. Their frustration about not knowing if it's real or not, and having tension trying to convince the person to submit to psychological "fixing" - sometimes occupies their minds as the hardest thing anyone in the situation is dealing with.

This is how, for example, small accommodations that the non-ill people need to make (such as showering for mold illness) are seen as on par with or potentially more difficult than what the patient deals with (such as mold reactions, trouble breathing, difficulty sleeping, brain fog, etc.).  Forget that the patient is probably engaging in all those accommodations for himself or herself anyway! (Accommodations are not just made by family/friends - they are also often practiced by patients themselves to accommodate their own bodies.)

Here's how the equation works:

Family/professionals/acquaintances of patients, typically able-bodied:
Articles discussing or justifying the controversy about the disease (building up the idea of controversy as a real and important thing) +
Being able-bodied relative to the patient +
Not dealing with a maligned disease (having respected illness privilege or able-bodied privilege) +
"Average person on the street" would probably share their same stereotypes/agree with them +
Confusion and stress they face in not knowing if the patient is actually ill, and trying (and perhaps meeting resistance) to convince the patient that they have and should treat untreated psychological problems

this privilege, and their frustration ends up being greater than/counting more than:

Patients:
Suffering from being in two minority groups - disabled/sick/crip as well as doubted disease groups +
For many diseases, also dealing with brain inflammation and neuroendocrine changes that reduce their personality attractiveness (less self-control, less prefrontal cortex activity, more irritability, less bubbly personality) +
Physically-generated signs of depression or sickness syndrome +
Lack of economic and social privilege if unable to work or progress at work as much +
Their frustration about lack of support for medical treatment

It's not usually a fair match. The people with more privilege tend to win the discussions, and relatively minor frustrations or risks to the privileged groups end up being counted as equal or greater than the (more or less) survival concerns of the less privileged patients.

As an example:
Like many patients, most of my concerns are diminished to the level of wanting to be physically safe. I can handle people talking to me in demeaning ways, I can look the other way, I can ignore it, but I need to be physically safe and have adequate medical treatment, and most of my requests center around that. You can tell people are in a rough spot if mere physical safety is their main concern and they are lenient on pretty much everything else. 

As an example of this assumption that the privileged people's problems matter more:
Our couples therapist acted frustrated that I was "trying to control his thinking" about my disease, or that I confronted him about the way he wasn't simply deferring to my doctor. Apparently those frustrations toward him (being confronted, or being asked to not express doubt about a condition I've been diagnosed by from a licensed physician) counted more than ... oh, the possible harm and emotional distress that could come to me as a patient by having my actual physical disease doubted at therapy and having that doubt reinforced in front of my boyfriend, who then uses the doubt as an excuse not to cooperate or support me when I have medical needs or illness symptoms at home.

I'm sure being asked to take something seriously or being confronted can be hard; but in my experience it's not as hard as what patients will face if their condition is not taken seriously, such as mold reactions, glutathione depletion, being abandoned by loved ones when they are dealing with the most severe physical problems, etc.

The phobia of taking doubted diseases seriously seems to be a veiled way to suggest that the needs of able-bodied privileged to avoid the risk of accommodating non-existent medical issues are more important than the need for people to have access to medical care when they need it.

(If we saw these groups as equal in worth, then of course, if a disease were doubted and up for discussion, the risk of not treating a medical issue would outweigh the risk of going along with someone's mental issue that made them think they had a medical issue, in a Pascal's Wager sense.)

So what can we do to change the attitude toward doubting disease?

I think it's important to spread the word about the historical pattern of misunderstanding real illness to be psychological and how that practice endangers everyone.

It can affect anyone, including currently able-bodied people.

All people are at risk when some diseases are mistakenly classified as psychological or even when the spectre of somatizing is raised - since almost anyone can develop health problems of unknown origin and then face questions about whether the problem is "real."

Rather than splitting the world into able-bodied people who matter more, and patients who lack as much privilege - we should see ourselves as a culture and country with a strange pattern of writing of all types of illnesses as psychological, to many people's detriment and in some cases fatality. When it's happening to anyone, none of us is safe.

Psychologizing people's claimed and stated illnesses is a major risk to public health, and I think we need to cut down on this practice by making people "sick until proven psychological" rather than the other way around. It does occasionally happen that people fake illness for personal gain or that people are hypochondriacs, but those tend to follow patterns and to have other clues. Those clues and patterns are absent in pretty much most neuroimmune (chronic Lyme, ME, CFS, MCS, CIRS, mold illness) patients.

Calling diseases psychological is a cheap trick used to bolster all types of privilege and institutions: insurance companies, doctors, government, able-bodied people, and anyone with the privilege of not having a doubted disease. It's also potentially devastating or deadly to stop taking someone seriously when they are saying they have medical needs. Our safety in this culture depends on our commitment to taking people seriously when they claim to have medical needs.



Monday, June 30, 2014

Six different approaches I've used for coping with chronic Lyme and mold illness

I'm thinking back about my different approaches to the balance between taking care of myself around chronic Lyme and tick-borne infections and mold, versus trying to live life and fit in and not cause friction.

1) Try to make it disappear

This has been the least conflict-driving approach for me, at least in the short run. In this approach, I see the illnesses as shameful (internalized discrimination) and take a cue from people in my life that focusing on them is bad, bad thinking, and that I should try to just live normally as much as possible.

In this approach, I challenge myself to take risks and to have as normal of a life as possible. I might travel, stay in new places where I don't know if it's moldy or not, eat out, be social, push myself to tolerate loud noises despite hyperacusis. If I have any symptoms or reactions I try to hide them.

It prompts some good things that sometimes work for me, like thinking about what I'd like to be doing if illness were no object, joining communities, making friends, being social, feeling normal, drinking, eating out, seeing new places, dressing well, and seeing that I still have it in me to "pass" for normal and that I can still access many things that healthy people access.

The drawback is that in this approach, I'm taking insane amounts of risk that other people around me aren't noticing are risks because I'm not telling them or prepping them. When things break down, other people can be confused - you seemed so healthy and you didn't mention any problems, why are you flipping and having a problem with this non-organic food/building/place/etc?

I had a really big disaster using this approach last Christmas Eve, when we tried to find a restaurant among those that were still open (the restaurants I'd been to before were closed), and I settled on a questionable restaurant since it seemed like the best option because I wanted to be "normal" and able to eat out, and I had a terrible reaction to whatever oils they were using in the salad dressing and on the burger. My body blew up and got puffy immediately and I started crying and feeling emotional and had to leave the restaurant and cry outdoors. Crazy times. I should have just said I don't feel comfortable eating out except at reliable places, and we should have eaten at home.

Verdict: This approach is great while it works, but when it doesn't work, it can be terrible.

2) Be gentle on myself

This has been an approach I go into when replenishing my body. I did the RRARF thing (Matt Stone) and ended up sleeping a huge amount for a month, and I was just easy on myself and didn't even drive much since my body couldn't handle much stress.

Other times, I just feel like sleeping a lot or not being stressed, particularly when going through any major bodily change (detox, herxing, etc.).

I love reading in bed and napping in the afternoon. I also watch Portlandia and comedy and stuff on Netflix.

Verdict: This approach feels wonderful to me, and it helps me to stay on an even keel emotionally (because I'm taking care of myself so well), but it can be misinterpreted as being lazy or depressed especially by my partner who is prone to seeing it that way. Also, some days I end up feeling worse if I rest than I would feel if I went out of the house to do things. I think it works best if I do this a lot when my partner is at work, and then we use the weekends and evenings to do things together.

3) Eat tons of nutritious food

If I check in with my body, often what it wants lately is not fasting or Paleo or any particular diet, but rather huge amounts of nutritious food.

I got inspired from The Wahls Protocol to start eating a certain high amount of fruits and vegetables every day.

It's slightly expensive and usually involves my going to the grocery store once or even more than once per day (which is awkward because there is a guy who works there who stares at me a lot. he's cute. but it's just weird running into him so much). However, it feels great to my body and often makes me much more relaxed.

My boyfriend and I joke that we lack the executive function to buy food for more than one day. It's quite hard to plan ahead, particularly when you go by what your body wants to eat at the time. I never know what my body will crave (or not want to eat) the next day.

Verdict: This is a good approach. I just have to stick to less-expensive foods. I typically judge all the fruits and vegetables by their price per pound and try to stick to those that have a low price-per-pound.

4) Find things that work well for me

When I move to a new area it takes a while to find what foods I can eat at restaurants without symptoms, what buildings I can go to without reactions, what restaurants are not too noisy at what times, what parts of town are not moldy (some parts are moldy), how to drive various places, etc.

Once I've been somewhere or eaten something once, that activity is then open to me, where I can repeat it ad nauseum with very little risk.

It's nice to know, for example, I can go to Ikea and have a nice time (but not eat their food except for maybe a fruit drink), or have the side of potatoes at a certain restaurant, etc.

Verdict: This helps me to have a low-stress life, if I've accumulated a lot of patterns of things I know I can do fairly safely. It inspires me to try new things, since when I try something new (often with a little research in advance, particularly for food), then it's not just a benefit for that day; it also opens up something I can do other times in the future.

5) Detox a lot 

When I find a new detox method that dredges up toxins at a deeper level than I've reached so far, I go through about two weeks of intense detox where I need to rest a lot in my free time. 

I often try to push the detox harder by combining the method with saunas, showers, charcoal soap, juicing, methylation, etc. I call it "kamikaze detox" where I constantly try to drive it faster or harder by supplying whatever my body can sense is the missing ingredient at the time. If you keep supplying the missing ingredient (whether it's water, or B12, or molybdenum, or protein, or rest, or a sauna) then the detox proceeds at the maximum rate. Think of chemistry reactions - where the reaction has a limiting ingredient.

Verdict: This doesn't feel great while it's happening and makes me a bit of a wreck (not angry, but just out of it), but it's the main way I've gotten my mold sensitivity down. Every time after these detox weeks, I end up being surprised by things that no longer bother me that much (like Banana Republic, the hallway, this moldy garden supply building I walk past, etc.).

6) Raise my consciousness about why and how patients are persecuted

I haven't found much that's helpful from the chronic Lyme or ME communities about the discrimination, except the Kafka Pandemic blog and the Thrive show/Jen Brea's stuff.

So I've started reading materials from other overlapping or analogous groups that also experience erasure and discrimination, including the bisexual, queer, disability, crip (as queer is to LGBT, crip is to disability), feminist, and general anti-oppression groups.

It's so great to build up a community, even if only through books and blogs and articles, of people who are also devoted to talking back to the dominant paradigm and asserting our personhood and the worth of our experiences.

It's very difficult to stand up to discrimination alone, and I draw a lot of power from these empowered groups, many of whom are (frankly) far more aware and empowered than the average chronic Lyme or ME patient.

The level of unawareness among patients tends to frustrate me. How would it be to be in another oppressed group, like to be gay, and to have the main advice available to you about how to handle slurs or lack of access to care or stuff be - "well, just don't worry what other people think, and just keep it private so you don't bother other people."

That seems to be the main advice given to patients. It's a model that sees other people as valid and ourselves as not valid, if we have to excuse their often dehumanizing remarks and stereotypes and edit and censor ourselves so that we don't set other people off or trigger the stereotypes to come down on us. It's an approach that says it's not ok or advisable to just be ourselves and share our truth about our experiences. Maybe because I'm a bit Aspie, I have a hard time doing that! It's hard for me to censor myself so that I come out seeming normal, particularly when at times my brain is impacted by treatment or herxing and there is no way I'm going to seem normal under stress.

Verdict: Raising my consciousness has been quite helpful in the long run. It makes me far more relaxed, knowing that other people are helping to pull the load too - of creating space for us to have our experiences and be proud of them, and to understand the forces that would tend to shut us up or to cause us to feel timid or wrong for our experiences and truths. I feel less alone. I know I can return to these books or blogs or communities for support in feeling ok to be myself, and can join a movement of respecting the truths of everyone's lived experiences.

The major risk of this approach is that discrimination and stereotypes can start bothering you a lot more if you suddenly notice them more. There's a risk of suddenly starting to see stereotypes and patterns everywhere that you used to think were just normal. Raising consciousness often means that many things cease to look normal to you, which can involve some adjustment.

Raising your consciousness also makes it much harder to do approach #1, where you just try to erase the illness, since you realize - why should I have to erase my truth? This is my life. I'm not going to intentionally make other people uncomfortable, but I'm also not going to be ashamed.

The major interpersonal benefit is that it enables you to respond to problems in a more empowered way, where you know there is some evidence behind you. Not just evidence about how your disease exists (an argument I'm not sure it's always beneficial to have, since you don't want to be on the defensive and since people can write off most of the evidence for not coming from a totally mainstream site) - but evidence about how the discrimination and stereotypes work and how it's ok and desirable for groups to stick to what they know is true and ultimately to be themselves.

I'm still figuring out how this one works, but so far it's been empowering and it helps me to have something to hold onto when weathering stereotypes and discrimination.

Saturday, June 28, 2014

One disease

I'm starting to think we need not just/necessarily illness recognition, but also disease process recognition - in the sense of recognition of what RoundUp, mold toxins, gluten, etc. can do to people and the severity of the problems they can cause.

We have a lot of diseases that no longer fit a typical disease model where they are unique or single-cause.

Instead we have, as Terry Wahls says, one major disease, no matter what the individual diagnosis, in toxicity and lack of nutrition. Pretty much everyone has it, to degrees that range from minor symptoms to death or complete disability.

What if we thought of ALL of us as sufferers of the same environmentally-caused condition?

We come into life with whatever genes or prenatal exposures we had, and we try to make it. Those who aren't doing as well have more to share, and a harder time. There could be a positive identity to being essentially the breakwater for society.

Like they say - those people who are less privileged tend to understand the structure better.. Those people with less internal health privilege tend to understand the system impacting all of our health better.

Reading Crip Theory

Some thoughts and notes from reading Crip Theory:
  • It's interesting that true able-bodiedness doesn't necessarily exist. There are huge varieties in pretty much everything physical - some people are "able-bodied" but have bad intestinal function or leaky gut. Some "able-bodied" people require a lot of self-medication or OTC drugs or prescriptions to stay functional. Some people are disabled but have good nutrition and look extremely healthy. Some people with Asperger's and autism spectrum look very young. Some people seem healthy but are on their way to some catastrophic health problem, whereas people who are more aware of their health issues actually have a positive derivative of health change. 
  • It's interesting that able-bodiedness is put forward as the goal, with being disabled as worse. But it could be more that there's just variety - . 
  • It's in some ways an industrial society that promotes "being able to work" - and not just to work, but to work in the particular ways that industries are comfortable with - as superior. There are other models of work, such as ROWE (Results-Only Work Environment) that could be accessible to far more people who are currently unable to access regular assembly-line-modeled 40-hour+/week work. Work and contributing doesn't have to be done in a single office during specified hours in prescribed ways.
  • In my own opinion, disability seems to be taking over society due to increasing chemical and electromagnetic toxicity and problems with food and mold - so perhaps we'd be advised to look into environmental justice movements. Being disabled with any partly or fully environmental illness puts people in a certain category that could situate them to be activists.
  • In a world where many, many people are becoming chronically ill at younger and younger ages, isn't it "normal" to be ill or disabled? Could it be desirable to be this way to have one's eyes opened? We are holding up an ideal of "health" that few of us have anymore.
  • Just as there is economic privilege, there is food privilege and health privilege. Some lucky people these days (many of them in their 70s or 80s or 90s) grew up on farms and had raw milk and fresh extremely "local" mostly organic vegetables from an early age and during preconception and gestation. Particularly having good nutrition and low toxins during preconception and gestation is a huge privilege.
  • I have thought for a while that it's likely we'll start having pregnancy tourism - after noting the major effects of toxic exposures when a baby is developing, women who can afford to might take off work or work remotely and go live in low-toxin areas while growing their babies - ideally areas where they have low stress, ample nutrition, whole foods, local food, organic food, clean air, etc.. That period of preconception and gestation is so important to building a strong baby. 
  • It's scary that it's getting very difficult to build a healthy baby amid these toxins and low nutrition. I don't know what kinds of problems this generation of babies will face that haven't shown up yet - e.g., how will they fare in their 20s or 30s?
  • I feel like I exist in a weird twilight zone between my parents' generation, where people seemed pretty healthy, and the next generation (the one my kids would be in if I had kids), which is just - wow, lots of autism.

Friday, June 27, 2014

Looking to be less lonely

I really want to be less lonely.

It's lonely to be in an oppressed community that doesn't have a clear idea of how it's oppressed. The community flounders and knows something's wrong but can't articulate it clearly.

You see this with the bisexual community that is in large part stuck trying to prove it exists as a community, or to get permission to be part of the LGBT community.

It's such a relief to find books or writers that know what's going on, like The Kafka Pandemic and Bi: Notes for a Bisexual Revolution.

Such a relief.

I keep reading in search of people who can articulate what's going on so that I don't feel crazy for seeing it. It's a community process and we can learn from other communities. It's hard to state things as they are on one's own.

I guess many people can be lonely, e.g., if they have a particular take on activism in a community - even if a larger community exists.

Treating systematic oppression as individual mistakes

Part of what bothers me is that from my vantage point it seems that people with certain illnesses are severely, severely oppressed - to this incredible degree where they are kind of thrown out of society, even on intimate levels like with their families and loved ones.

Yet the discourse in these communities is not that evolved at all. They aren't that clear on how they are being oppressed by systems, and they generally act as though it must be mistakes.

It's as though some people with these diseases - the ATM and credit cards companies target them so that their cards they hardly work at any stores, and they steal money from the people or put a surcharge on all their purchases, but the people to whom it's happening treat the situation like it's just a mistake, like going to a store and having your card not work in the reader.

It's not just a mistake. It's not just isolated incidents. The people we encounter might be making mistakes, but the systems, and indeed possibly (and likely) some individuals near the top are not making mistakes.

Much of the advice around how to handle it in these groups is centered on thinking of it as individual mistakes. Forgiving individuals for not getting it.

Where's the accountability for the systems?

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As I said before, at some level, what we deal with is not a mistake. At some level, other people are benefitting.

Somehow that changes it. It makes it more ok to be upset or to not locate the blame in ourselves. If we don't look at the larger systems, we have only the individuals to get mad at, and they might be making mistakes, so it's hard to get our full anger out at that one often clueless individual without appearing unreasonable.

That one individual is not responsible for the systematic restriction of treatment for neuroimmune patients. But a larger system is. And it's ok to get mad about the larger system. 

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