"There is No Cure."

[Sweet_E]

Unfortunately though, you read a research article, which was intended to convey information about the condition PTSD. Which it did.

It wasn’t an article designed to make you feel good about having ptsd. It was designed to convey information.

I thought it was a great article!

 

[Friday]

My main point is that what we say regarding someone's possibility for healing is very powerful.

Whether or not there’s a cure has zip, zero, nada to do with a person’s potential for recovery. A bazillion things are uncurable (from the common cold on upward), that people recover completely from, all the time.

Believing there’s a cure, when there isn’t? AND it’s a relapsing/remitting condition? Is a pretty dangerous thing, on the other hand. Whether you’re talking cancer, malaria, or PTSD.

 

[Sweet_E]

Unfortunately though, you read a research article, which was intended to convey information about the condition PTSD. Which it did.

It wasn’t an article designed to make you feel good about having ptsd. It was designed to convey information.

The specific article isn't what is important. An article just reminded me of what I hear and read from various sources. Some people, not anyone specific, feel that it is necessary to drive home some kind of point about PTSD not being curable, in situations where it is not necessary, and sometimes actually harmful.

My post was not a critique of a specific article, it was to hold a discussion about how what we say and believe are powerful and to express my personal experience when I continually hear that phrase.

 

[Sweet_E]

Whether or not there’s a cure has zip, zero, nada to do with a person’s potential for recovery. A bazillion things are uncurable (from the common cold on upward), that people recover completely from, all the time.

Believing there’s a cure, when there isn’t? AND it’s a relapsing/remitting condition? Is a pretty dangerous thing, on the other hand. Whether you’re talking cancer, malaria, or PTSD.

It actually does. Medical science is continually coming around to the side of the mind/body connection. This is why people experience the placebo affect.

 

[Sideways]

I thought it was a great article!

Right, and it was.

If the issue is that “I’d rather be told it that...”, well, sure. I’d rather be told that $50,000 has just appeared in my bank account. That’d make me feel better than someone telling me I have an incurable illness. Being told I have an incureable illness isn’t my idea of a good time either!

But given that’s the current state of play? That ptsd is treatable, but not cureable? It’s important that someone tells us that. Straight up. Because it means you should absolutely go get treatment, so that you can put this illness behind you. But it also means that you’re going to be smart about looking after your mental health moving forward, and that you know exactly what your personal mental health situation is. “I’ve had ptsd. It’s in remission, but if experience more trauma? I probably need to be on the lookout for certain things, and take preventative health measures...”.

Accurate information about our health is rarely good fun. But it’s important we have accurate information. So we can be smart about looking after ourselves.

 

[Sweet_E]

For our science-minded friends, here's a quote from PubMed:

An important observation was that, part of the placebo response seemed to involve the meaning of the disorder or the illness to the individual. In other words, the person's belief or how she/he interprets (inter-presents or internally represents) directly governs the biological response or behavior. Another remarkable study involved a schizophrenic. This woman was observed to have split personality. Under normal conditions, her blood glucose levels were normal. However, the moment she believed she was diabetic, her entire physiology changed to become that of a diabetic, including elevated blood glucose levels.

The biochemistry of belief

 

[Ronin]

I believe there is at least one documented case of someone going from HIV positive to HIV negative.

HIV status does not equal AIDS.
One case of anything is not relevant to a prognosis of millions of other cases.

For the sake of discussion, even though we are already talking apples and will power pseudo psychosomatic nonsense oranges.

in situations where it is not necessary, and sometimes actually harmful.

Applied back to this here disorder> How is the knowledge it is incurable actually harmful?
Or Not Necessary?
I spent decades with people telling me trauma is just how things are (and many wildly different things about it, but we can go without how curses caused man made violence is, and all. :D). And then doctors full of Oh, well, this constellation cannot be done jack about, too weird anxiety, that depression is also atypical, and why do you avoid things of three decades ago, again? :(

Meantime, people drawing parallels between triggers and current stress, who have been there? Bless :D I could start checking both and working on things.
And then finding this and that also follows fairly typical patterns? There goes the despair about being doomed forever, because I am stuck with symptoms of things I just Do Not Understand, cannot fix, cannot predict, and will power alone and creativity will not help with organizing.

So tell me, how is correct and current information harmful?
Because I am genuinely curious about that.

 

[Sweet_E]

Right, and it was.

If the issue is that “I’d rather be told it that...”, well, sure. I’d rather be told that $50,000 has just appeared in my bank account. That’d make me feel better than someone telling me I have an incurable illness. Being told I have an incureable illness isn’t my idea of a good time either!

.

Your statement misses the point. I'm not saying people should go around saying something reckless. My opinion is that in some cases it is more beneficial AND accurate to state something along the lines of "Conventional medicine has not found a cure" or "I'm not aware of a cure." I think it depends on the context. Some people do find it beneficial to hear, "There is no cure." I feel that this statement, out of context does not tell the whole truth. And you know what, "There is no cure" might not seem negative to some at all. And that is fine.

So tell me, how is correct and current information harmful?
Because I am genuinely curious about that.

I'm not saying that the statement, "There is no cure" is ALWAYS harmful. It can be harmful depending on the context. It is scientifically accepted that what a person believes and feels about their condition can have a direct impact on how their body deals with it. My opinion is that many instances of the phrase "There is no cure" conveys to people a much more negative message than is necessary. I've seen instances where a person has asked for solutions for dealing with PTSD symptoms and the other person feels the need to emphasize that there is no cure. To me, that is unnecessary. It can take away their hope and make them feel like they are doomed to feel the way they do forever. If however, someone with PTSD point blank asked me, "Is there a cure for PTSD?" I could say, "Conventional medicine has not found a so called cure but some people do go into remission with proper treatment. Better treatments are being developed everyday." I know this seems very picky to some, and everyone is entitled to their own opinion. I just felt the need to express mine.

 

[Sideways]

And you know what, "There is no cure" might not seem negative to some at all.

No. It’s not about whether or not the statement has positive or negative value. It’s not a value-laden statement. It’s a fact.

Adding value to it is something you’ve done yourself. And what I’m saying is: accurate medical information is absolutely essential.

 

[Friday]

It actually does. Medical science is continually coming around to the side of the mind/body connection. This is why people experience the placebo affect.

You’re mixing up 2 things here.

It’s a medical truism (truth being different from fact) that if you believe you’re going to be fine, you usually will be. It’s freaky, and awesome, and wicked cool... and we don’t entirely understand the mechanisms involved. But, yes, it’s how placebos work, in some cases, for limited periods of time, for some people. It’s also how we had a massive spike of gunshot deaths in the 1950s & 60’s. When there was infinitely LESS actual gun violence... People were dying left and right from completely non-fatal GSWs. There was no rhyme or reason to it, and it absolutely baffled the scientific community, until Hollywood (and the wild popularity of cowboy films & TV) was considered. Bang! You’re dead! Had -apparently- crept into the public conscious. (As determined by sociologists who found that in high crime areas -and returning veterans from WWII & Korea- & other similar cohort groups where people were used to violence, death rates stayed the same, but in the general population deaths were through the roof). The major studios were actually begged by the scientific community to make their fictional people harder to kill. To reduce the number of real deaths. Weird piece of entertainment history - this is why not only the heroes but also the villains and bystanders have become much harder to kill. And why we removed bang you’re dead from cartoons & TV for decades. (Not from a moral standpoint, and characters were allowed to LooneyToons die/comeback/die/comeback without interruption. But the massacres that you see in the wake of violence ended all because of An impassioned plea from doctors and scientists to executives and artists. Quirky, right?

Believing you’re going to be okay? Is different from believing there’s a cure.

If you have (had! I’m cured!) non hodgekins lymphoma? And you spike a fever? Well, you do what anyone does who spikes a fever. You take a couple Tylenol to lower it, and call in sick to work, and spend a few days recuperating at home. And die. 3 days later. Because if you didn’t believe you were cured, you would treat a sudden fever spike as a reason to haul ass to the ER, not a reason to take Tylenol and go to bed.

If you have (had! I’m cured!) malaria & spike a fever? Instead of getting on the appropriate anti-parasiticals , let’s waste a month or two in the ICU at Harvard Med school on antibiotics, antivirals, steroids... pretty much every medicine known to man that has zero effect on the tropical disease you’re currently experiencing. ((Actually, even if you wave a flag and shout “I have malaria!” In the US, it can still take weeks for your case to actually be kicked up the food chain to a tropical disease specialist, who is like “Oh. Malarial relapse. No biggie. Here you go!” You have to be insaaaaaaaanely proactive with Malaria in the states, making sure all your doctors are aware & on board, & you have treatments at home you refresh periodically... and still you’ll be taken ill the one time you leave the state on business, or when your doctor is on vacation & waste weeks on idiots, and you’ve got someone who doesn’t understand the basics of malaria. I’ve actually been told on numerous occasions by northern doctors that you can’t “get it again” :banghead: Idiots.)) But -to be fair- once you’re in fever psychosis, it’s difficult to get anyone to take anything you say seriously. They may understand malaria perfectly well, and just not understand that what you meant to say was “I’ve got malaria” instead of “your ceiling tiles are sparkling”.

Believing there’s a cure, when there isn’t one, means that people DON’T seek (or receive) appropriate treatment.

 

[Sweet_E]

No. It’s not about whether or not the statement has positive or negative value. It’s not a value-laden statement. It’s a fact.

Adding value to it is something you’ve done yourself. And what I’m saying is: accurate medical information is absolutely essential.

I see what you are saying. It is all about context. My personal rant has everything to do with HOW we convey the facts can have implications for the person's outcome. If a medical doctor has a poor bedside manner - even though he is following the medical protocol - it can have negative implications for a person's treatment. I also wanted to express to those who prefer to have a positive outlook about their PTSD journey that they can feel justified to do that.

One of my best friend's dad had muscular dystrophy. He was told he only had 2 years to live. He believed that he would be completely healed, which sounds crazy, right? He ended up living for 20 more years. I think his positive belief and his faith that was a huge factor in his astonishing fight against MD.

You’re mixing up 2 things here..

Believing there’s a cure, when there isn’t one, means that people DON’T seek (or receive) appropriate treatment.

I believe that's what is called a slippery slope fallacy. If someone believes that they can find a cure, or remission, or whatever their goal is, it does not necessarily mean they will behave recklessly. On the contrary, it could mean they work pretty damn hard developing skills to manage their symptoms while they try to work on the root cause.

 

[Sideways]

If a medical doctor has a poor bedside manner - even though he is following the medical protocol - it can have negative implications for a person's treatment.

Ok, cool. So yes, context is definitely important.

One thing to keep in mind perhaps? Is when we need to take some personal responsibility, rather than expecting those around us to adjust the way they behave or communicate.

Doctor with a lousy bedside manner? Sure. Give doc a few lessons with someone who can help doc improve that. Patient outcomes are going to improve.

But in this context? You read an article, on a ptsd website, conveying information about ptsd. For every person who puts a whole lot of value on the concept of a cure being possible one day? You have someone like me, and who reeeeally doesn’t like fluffy language when we’re talking about my health. I need things straight up, or I find it just plain old patronising! Different strokes, right?

It’s good to unpack this stuff occasionally, you know? If you’re currently approaching your mental health situation from a really vulnerable position, where it’s critical that things retain that positive spin? Then your T might be a better place to get your information from right now. Your T knows you personally, and has a better idea of your values and vulnerabilities, and can convey information in a way that will be helpful to you personally.