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.

No Goodness, No Hope

Jul 22, 2020 | , ,

It seems that society has shifted where you used to have to give an answer for the hope that was in you (1 Peter 3:15) where now it’s expected of you that you give an answer for the hope you don’t have. For me there is a real good reason for this because I have a visible physical disability which makes my every interaction with the world an incursion.

Yes they have gotten rid of those ugly laws of the early 20th century but don’t think things have improved much as people would like you to believe My whole life I have been rejected for jobs because of my disability and it’s gotten worse in the past three years. In fact one recruiter even blatantly said I need to somehow make people comfortable with my physical disability (as, as I already understood at the time, it was an incursion on the abled world). A subsequent interview I brought up my visual impairment about three quarters of the way through the interview and they were like, “we thought you couldn’t see”. At least they were honest.

I’m grateful for the Black Lives Matter chant, “no justice, no peace”, but I’d like to add to that, “no goodness, no hope”. I have found no goodness in the vocational world so am under no obligation to hope. People in power strongly dislike the fact that a lot of us are hopeless because hopelessness by definition means that something in the environment has to change in order to restore hope. Asking for goodness in the wasteland of late stage capitalism is just too much of an ask.

To take it further modern psychology’s imperative to hope makes even less sense than Christianity’s. With Christianity you ideally have a supportive community around you and (if you have the capacity to believe it) a good thing coming in the afterlife. Modern psychology (which is the primary driver of late stage capitalism) gives an imperative to hope without giving an imperative to virtue. People need to pay into the system via virtue to be able to withdraw from it in the form of hope. Goodness is what germinates hope, when there isn’t goodness people still want to be seen as good so they still give you the imperative to hope and trust. But this just does more harm than good as you are just immobilized by the blowback of shitty people.

Helping professionals generally have empathy but they can’t put them selves in the shoes of the average businessman who will be much more judgmental than them when it comes time to give jobs. Because if this they mistakenly believe you have more hope than you actually do.

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.

Tips for Improving Diversity

Dec 28, 2019 | ,

As an individual with a visible physical disability (some visual impairment) who has some autistic spectrum tendencies (though not diagnosed) I am an outcast most places I go. I am trying to improve myself to be less of one but here are some tips for groups that want to improve their diversity.

Designate a point person to welcome and include people who are on the periphery. This can be someone who has social skills and some connection to the core members of the group. If you are trying to reach marginalized groups it helps if this person is a member of said group but that is not imperative. If one person in the group is making those on the periphery feel welcome that will help these folks to open up and build connections with some of the other members. The analogy is like plastic wrap, the first tear is the hardest.

Follow up online with new members. This may mean talking with them on Slack or Discord or a similar service. If you built rapport with them they can start speaking more freely. Also if they show you their writing or projects pay attention. People who are marginalized tend to self sabotage by clamming up in groups they feel they don’t belong. This has happened to me frequently. So keep in mind the people you see may have a lot more to contribute to the group than they appear to due to this.

Be aware of structural barriers. I once saw a faith based conference where people were grousing about how the group attending wasn’t diverse enough. It cost $150. Lots of marginalized groups are also low income and often don’t have cars. They may not be able to get to or afford what you have to offer. Mitigating this can be difficult and inconvenient but you must decide how much you are willing to sacrifice in order to become more diverse.

Be kind. The world is becoming an increasingly cruel place. This hurts the people without power the most because they can’t counter bad actors. The more of an asshole you are the more racist/sexist/homophobic/ablest actions you are going to perform even if you yourself harbor no ill will toward minorities. The problem with kindness and virtue is that it’s “caught not taught” so even if you know the right thing to do in your head, you usually end up aping what you see in your surroundings.

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.

On Abortion: Christians don’t want to pay for things

May 18, 2019 | , ,

Christians are rightfully horrified of the fact that there are hardly any Downs people in Iceland because most of them get winnowed out via pre natal tests and aborted. However Iceland is more socialist than the U.S. with cradle to the grave social services. People with disabilities exact a great drain on society.

The Christian way is to just make everyone have as many kids as possible and then let the ones with disabilities rot on the vine when they get older. If Christians actually had to pay for the social services for all the children that get birthed then their pro life stance would be more costly. They want the best of both worlds and with their people in power that’s exactly what they’re getting.

God’s Inaction in Action

Jul 21, 2017 | ,

Christians are so turned off by people with disabilities because they display God’s inaction in action.  They are kryptonite for prayer, their conditions often worsen instead of better with time.  Christians are not allowed to resent God for his inaction directly so they do so vicariously through individuals with disabilities.  That’s why people with disabilities often get treated worse in church than other places.

Disability Article

Aug 20, 2016 |

Great comment by phil on a NYTimes disability article:

Every person begins in a state of total dependence and most end life in some level of the same. one day I will be disabled.
I think the real problem is the wretched idea that the most human among us should be independent. I refuse to dehumanize another because their level of dependence on others is greater than mine. There would be no need for a pride movement among the more dependent if we started accepting our interdependence and if we humanized people, not based on their abilities, but based on their innate humanity.

 

The Insidious Ableism of the Therapeutic Industrial Complex

Jul 10, 2016 | ,

Therapists demonize neediness and dependence.  Somehow we are all supposed to live in a world where we can live a self contained hyperindividualistic existence.  Unfortunately economic reality dictates that many of us can’t and certainly most of us with disabilities can’t.  What we can’t help being is what we’re not supposed to be.  If that isn’t ableism I don’t know what is.  It’s even worse than religion.  At least with religion if you submit to their tenants and perform their rituals they usually treat you as someone you’re supposed to be.

And why is dependence a bad thing?  Calling someone dependent on others is almost a slur.  If the capability to be autonomous wasn’t out of reach for a large portion of our generation then maybe you could make the case for it.  But it’s not.  It’s just another way to kick us while we’re already down.  That’s what our culture is good at, kicking us when we’re down.  Those on top are loved and lifted up.  Everyone else can go die in a fire.

Two Harsh Observations about Disability

Nov 24, 2014 |

You will be judged more harshly than someone without a disability, particularly if you lose things that give you value in this society.  As long as you have things a normal person is expected to have like a job and a place you will be tolerated.  Lose these things however and you will be judged more harshly.  A person without a disability who doesn’t have a job will often be given more grace, basically “he’ll be back on his feet in a matter of time”.  Someone with a disability will not.  People will assume you are on the government dole (often true as one had to claim disability to get badly needed health insurance, even now with Obamacare you need to do this in the states that didn’t expand Medicaid).  People are smart.  They use conjecture to ascertain others’ future and after taking that action decide whether that person is worth engaging.  A bitter irony is in the case of someone with a disability part of the reason people are rejecting is they assume the person won’t get a job because of the workplace based prejudice the rejectors themselves often perpetrate.

If you have a visible disability it’s your responsibility to make others comfortable with it.  With a visible disability your every interaction with the world is an incursion.  Your disability makes others in the room uncomfortable and it is incumbent upon you to put them at ease.  My little brother actually brought this to my attention when he hurt his hand a couple of years ago.  The hand looked awkward while it was healing (he called it an alien baby hand though I couldn’t tell anything was wrong). Now my little brother has good social skills so has no problem scoping out the room and finding a fitting way to put the people in the room at ease with this hand.  Unfortunately as someone on the autistic spectrum I do not have this skill.  When I was a child people were more direct about my disability (very thick glasses) so I could clear the air and then they were fine with it.  As an adult people are more obtuse, without the directness I’m lost—and I lose.

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