How to advocate for yourself at the doctor’s office

Nov 14, 2020 | ,

Apparently trying to get pain treatment is too hot for Reddit. You learn something new every day..

Physical Health

  • When the HCP (health care professional) isn’t taking your pain seriously:

The pain I’m experiencing is impacting my life in X way. I cannot tolerate it. You need to review what you’re doing to help me.

This pain is not normal. My daily life is being interrupted by this pain. Your treatment is not adequate.

Telling me to bear the pain is not helpful. What options are you not telling me? What could this pain mean that you have ruled out? Why did you rule X out?

You are not handling my pain management effectively. If you think I’m exaggerating, you need to remove your personal thoughts from this. I am not going to leave without a new pain management plan.

  • When the HCP says it’s “normal”

What evidence do you have that this is normal? What have you done to rule out other possibilities?

This might be normal for other people, it is not normal to me. I need you to rule out X before you tell me it’s normal.

Wouldn’t you rather be safe than sorry? Please explain what this could mean and why it wouldn’t apply to me?

If this is normal why is it impacting me in X way? Do not ignore my symptoms because it’s easier to. This is like when HCPs ignore endometriosis, are you one of those HCPs?

My family history includes X. How have you taken that into account?

  • When the HCP says that the solution is losing weight

If I was at the weight you want me to be, and I had the same symptoms, what would the treatment plan be?

Why is there no other component to the treatment plan? What will losing weight do?

Are you aware of the HAES movement in the medical community? Do you support it? (If answer is no) I need you to employ their principle of including other options in the treatment plan. This is non-negotiable.

If I was skinny, what would you do? Why is that not part of your plan now?

Why is the first solution weight related? You need to include more to this plan.

Weight loss is not attainable for me. What else can I do? What are you not mentioning? Have you done everything else?

My condition X prevents me from losing weight. Why are you not considering that in my treatment plan?

  • When the HCP says “it’s all in your head”

I know my body. I am experiencing X and it is not normal. You need to tell me what you ruled out and why.

How did you end up at that conclusion? Why would it be in my head?

If I was a man presenting with these symptoms, what would you do?

No, it is not. My pain is real. You need to come up with a treatment plan and explain what you’re doing to help me.

X is not in my head. Stop dismissing me. Explain why you’re saying this. I need a thorough response!

Mental Health

  • When the HCP says that you should “just think good thoughts”

Show me evidence that this a valid treatment for the symptom X I’m experiencing.

Why are you saying that? What source tells you to talk to patients this way?

Good thoughts are not something my mind produces anymore because of X. Stop ignoring my concerns and give me concrete solutions.

Good thoughts are not a valid treatment for X. How did you end up there?

  • When the HCP says “you’re too functioning/good/social/energetic/happy to have X”

Just because I learned to work around X doesn’t mean I don’t have it. Why are you ignoring my concerns?

My attitude and personality should not be factors in your evaluation of X. Why are you basing your conclusion off of outdated stereotypes?

That isn’t a factor in X. You are purposely using my coping mechanisms to dismiss me. Stop. Please review the DSM-5 manual and show me how X doesn’t apply to me.

You are a professional. You should recognize that X affects people differently. Just because I have created ways to work around it doesn’t mean you should pretend I’m okay. I have been experiencing Y symptoms. Why are you ignoring them?

X presents differently in women. Why are you using outdated information to deny me a diagnosis?

  • When the HCP starts talking about themselves

I appreciate that you feel comfortable talking about yourself. Unfortunately, I don’t have the emotional capacity to carry another person’s load. Please focus on me.

This is my session. The current discussion is unhelpful.

I am not understanding how this is relevant to my treatment. Can we circle back to my issue?

Your current content is not helping me. Can we do X instead?

When you talk about yourself, you make me feel worse. The treatment plan includes X, can we do that instead?

I hope this helps y’all!

Edit:

I have read a lot of your comments, and while I am quite sure some of them come from a fatphobic standpoint, let’s put that aside to understand why this comes across as adversarial and “rude.”

Women and minorities have experienced less quality of care in medicine for years. This has been extensively covered in the following (the John Oliver thing leads you to several sources)

John Oliver covering it in an LWT episode

This Harvard article outlines strategies they have employed to combat bias in medicine

Another Harvard article discussing racial bias in medicine

This Yale med school article discusses studies in this area

From personal experience, doctors are less likely to ignore your symptoms if you are firm and somewhat “adversarial.” I have seen these phrases and sentences work in real life. I have seen doctors change their minds and explore other options only to find out they were wrong originally.

Thank you to everyone who gave awards. I appreciate you. Thank you to the comments sharing your bias in medicine stories. You are brave and you are right to advocate for yourself. Please keep sharing your stories, we need this to be taken more seriously.

The Opposite of a Christian

Jul 5, 2020 | , ,

The opposite of a Christian is not an atheist, it is someone with mental illness.

Christianity posits that you can trust your inner voice, mental illness demonstrates that you can’t. People say “God” tells you things that are outside the scope of what you could come up with with rational thought alone, but so does mental illness. And it does so at a moment of weakness where you won’t be able to differentiate between the two (if there was even a way to tell in the first place). As for me the voice of God told me to drink urine, kill myself, and date women out of my league. Suffice it to say I stopped taking it seriously rather soon. Now I get it that people without mental illness and even people with mental illness can trust their inner voice and I’m happy for them but that doesn’t mean this is universal.

Mental illness often hinders your ability to project the idea you are actually a Christian to those around you. Lets be honest, Christianity is performance art and part of being successful at it is selling the idea you are in the faith to your peers. When your Christian peers stop believing you believe, even if you still believe, it drags it down as faith is more of communal property than our individualistic culture would like to admit. It is very hard to perform when you are dying inside. Some people put on a show while struggling mentally but eventually they just break down after being pushed to the limit and sometimes end up completely different people. That didn’t quite happen to me because I was never good at putting on a show but many people are because they like the affirmation a community offers in exchange for their performance.

People with mental illnesses often don’t “experience God” or if they do it’s toxic. This ties into the first point. A lot of Christians brought up in the church who struggle with depression pine for an experience of God that is promised but never comes. In churches (particularly ones that feature praise and worship) God is sold as an entity that you can have an emotional connection with. The problem is with mental illness the ability to “feel God’s presence” is impaired. But depressed people pine for this experience repeatedly and it just makes them cycle down. In some denominations despair is a sin but it is also what a depressed person feels routinely, so it’s tantamount to making the symptom of a disease a sin.

Those with mental illnesses’ lives rarely go according to “God’s plan”. “God’s plan” is a loaded term which means a person is promised a life of material and social prosperity or at minimum a dignified existence with troubles that are manageable. It’s no secret our American culture is obsessed with success, health, independence, money, and status. When you don’t possess these things you are treated worse by Christians and non Christians alike. Christians want people who suffer to concoct some kind of redemptive narrative so they don’t have to be exposed to senseless evil and chaos. For me losing one thing after another to mental illness there was an incredible amount of shame dealing with Christian peers.

Flat affect and negative symptoms challenge the notion of the soul. Some people with severe mental illnesses lose so much of them selves that it’s almost like some of them has died. This makes people but especially Christians uncomfortable because they have a dualistic view of humans that there is a soul that is impervious to condition of the anatomy. Modern science says the self resides in the brain and seeing severely mentally ill people this is shown to be true.

People with mental illnesses are often ostracized by the church. I was. It’s one thing to call someone a liar, it’s a whole other thing to intimate they are one with every thread of your being. The reasons I have listed above make Christians very uncomfortable with people with mental illnesses. For those who hold tightly to certain beliefs cognitive dissonance is experienced as psychic pain. On a more practical level people with mental illnesses often say things that are inappropriate or only have conversations that are suitable for one on one interaction as they don’t have much to make small talk over.

What you can do to help. Believe people with mental illness when they tell you how bad it is. Offer material support like rides and inclusion, you generally have to build rapport with people on the margins before you will make much headway with them ministering.

Mental Illness and Christianity

Sep 10, 2019 | ,

Pastors have told me that mental illness is one of the worst things for the faith. I agree with them because that is largely how I lost mine.

Engaging with the supernatural and psychosis are often indistinguishable from each other. You could argue that the supernatural mainly manifests itself on the seat of consciousness. But mental illness often produces the same experiences as the supernatural purports to. Parts of bipolar mania are indistinguishable from the comforting positive experience of God most Christians promise. The voice of God often tells people to do things one wouldn’t think of had they been behaving rationally, but that same irrational voice of God is speaking loudly when someone is psychotic.

Anxiety is basically God now showing up, LOUDLY. Christians promise an experience of God which, while in anxiety, the exact opposite is produced. People who struggle with anxiety (including myself) have a hard time letting go and letting God because when we do things are even worse because our pathology is there instead of God. For us medication works worlds better than meditation. People without mental illnesses like to criticize us for this and call us weak or reprobate which pushes us further away from the faith.

God promises to never give you more than you can handle but mental illness is often the fallout of being pushed past your limit. There is this idea in Christianity that suffering is good. But mental illness seems to transpire off this map. For one every incident of psychosis weakens you so less stress is required to produce another one. For two (at least in my experience) pastors realize that because you have a mental illness you are an existential threat to the faith and treat you accordingly (and the laity simply ignore you because you don’t possess the “life gems” like money, status, and SO, etc..). Also suffering is really only ever redeemed communally while those with mental illnesses are often isolated because of vocational/social failure, stigma, and the fact that their pathology often causes them to behave in ways that push people away.

Depression produces the exact same experience as worm theology. Some Christians say you’re worse than the worst of the worst. The problem is people who struggle with depression often do their self flagellation in the name of their illness instead of the name of God. Also some Christians believe despair is a sin which is tantamount to guilting someone for being depressed. It’s like if you got a cold and instead of trying to treat it they just told you you were damned.

People with mental illness are often single and harder to engage as they get to middle age. The church is all about engaging older people as couples and doesn’t do too good of a job including older single people (those of us with mental illnesses often are not successful in the world or church’s eyes and this keeps us single). The other facet of the suffering mental illness produces not being redemptive is that when Christians help people with mental illnesses it often doesn’t feel redemptive as the pathology often causes sufferers to act in ways that confound Christians’ models of what suffering should look like. One has to be really sacrificial and a lot of times the effort put forth feels like plowing the sea. In our “me first” culture very few people are willing to go to these lengths particularly when engagement challenges their beliefs.

Mental illness kills redemptive narratives. Part of staying Christian involves cobbling together some kind of redemptive back story to try to make things make sense in hindsight (to show God somehow being involved despite everything). Mental illness, particularly depression, causes one to chafe against seeing anything redemptive about the past because suffering from it is senseless, chaotic, and often isolating suffering and when a mind has been in this state long enough it is no longer able to play the mental gymnastics needed to polish a turd.

There’s a good reason why in the Bible mental illness was always seen as direct action of the devil or his charges. Because to this day it’s destroying faiths all around.

Cures for Depression

Aug 8, 2019 | , ,

I cured depression! I am diligently working on my Nobel Prize acceptance speech. I actually have 3 cures:

Shame it away. Shame is powerful and sets people straight. If you shame depression away it disappears. You are a terrible person for having depression, it’s your fault you don’t have the will power to get control of your mood.

Abuse it away. When you have a chronic condition that makes you less and less useful in society, expect you taking up more space to be met with abuse, especially if you are low in society already. Abuse works wonders for depression. It is so wonderful that when you experience it you pass it on to your kids and others around you!

Guilt it away. Despair is a sin. If you don’t have access to God the best thing someone can do is guilt you about it and tell you you are a piece of excrement for being depressed. Your depression is due to your lack of character. You are obviously not right with God.

Why?

May 23, 2019 | ,

Christians romanticize suffering which often results in mental illness which often makes people emotionally stunted. Of course Christianity is mostly engaged on the seat of the emotion. So these people are basically romanticizing something that kills faith indiscriminately.

Depression’s Causes

Jan 14, 2019 | ,

Great article on depression and basic income:

Why? If depression is primarily—as we have been led to believe by pharmaceutical company marketing campaigns—a problem with our brain chemistry, this makes no sense. The brains of the people of Dauphin did not suddenly evolve in those three years. But the World Health Organization, the leading medical body in the world, has explained: “Mental health is produced socially. The presence or absence of mental health is above all a social indicator and requires social as well as individual solutions.” In reality, depression and anxiety are produced by a broad range of factors. Some are biological—but many are social and psychological.

Exercise Guilting

Sep 2, 2018 |

An exercise that happens all too often in mental health circles is exercise guilting.  They tell people physical exercise can treat depression (without giving any details about how much) and then when it isn’t working (generally for people with more severe depression) they move the stakes and say things like “you’re doing it wrong” or “you haven’t been doing it a long enough time”.  You are not allowed to question which depression treatments work even if they don’t work for you because when you are depressed you are generally also on the bottom.

For me the things that often co-occur with exercise are helpful with depression (interaction with people, being out in nature) but exercising alone gives me no benefit.  Another reason people say exercise treats depression is, when people exercise, they want them to get the placebo effect where they think it’s working.  For me it is just the opposite, I get the nocebo effect from exercising because I have put it to the test so many times and it has failed.

The Tech Industry’s Psychological War on Kids

Jul 23, 2018 | ,

I have always understood psychology to be an enemy if not the enemy.

From an article on how digital media is messing up kids:

As a child and adolescent psychologist myself, the inevitable conclusion is both embarrassing and heartbreaking. The destructive forces of psychology deployed by the tech industry are making a greater impact on kids than the positive uses of psychology by mental health providers and child advocates. Put plainly, the science of psychology is hurting kids more than helping them.

The Discipline of Stigma

Dec 21, 2016 |

There is a good case to be made for the stigma surrounding mental illness, at least for those in power.  For one, it keeps money that could go to the rich from reaching social services.  The second is harder to explain.

We need to start seeing shame and stigma as a discipline because that’s the way those in power see them.  The discipline of stigma keeps people in line, following oppressive social mores like not divulging their pay or playing along with the culture’s ruse of meritocracy (the idea that there is a path to success for everyone provided they work hard enough).  The thing about stigma is the worse it is the more people under its thumb live in fear and those in power have a deep desire for all of us to live in fear so we don’t rock the boat.  If we were to conquer the monumental stigma against mental illness we would upset the discipline of stigma not in the least because we would turn our attention to conquering stigmas in other areas which would scare those in power.  Kind of like how after climbing the tallest mountain one can turn their sights on smaller mountains because of the confidence boost of successfully climbing the tallest one.

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