how do you guys respond to the psychiatric accusations

[Aerose91]

ME/CFS Primer for Clinical Practitioners It's far from perfect, but it's much better than nothing. It has lots of medical-speak in it which makes an impression on those who think it's all in our head but can't be bothered to do more than glance at a document.

"Why," you can ask, "do you suppose there's a document this thick for medical practitioners if it's all in my head? What section would you like to read first, the one about immune abnormalities, or the one about neuroendocrine dysregulation? Here, this section about autonomic dysfunction/cardiac abnormalities is quite interesting. Perhaps you'd like to start there?"

Lol, that's a great opening line.

And thank you for sending that

 

[Aerose91]

Hi Aerose, I can certain empathize with your situation. Sorry you're having to deal with it as much as you do.

After so many years and so many experiences, I've come to accept that a lot of people will never "get it". Given how unusual and complex our health issues are, I've even thought it may not necessarily be fair to expect them to. I've also come to accept that our culture often encourages castigation of those of have illnesses of "unknown etiology".

My own solution is essentially two-part: Accept how difficult it is for healthy people to understand what we deal with, and how they're so heavily influenced by our culture (and own health care systems). And two: - forgive them. I now consider their lack of compassion for others less fortunate than themselves to be THEIR issue, not mine.

To be honest, I never expected anyone to understand this. I don't care if they understand the specifics and complexities of this, just that they as much as believe in it.

I've pretty much come down to 2 wishes I have when dealing with other people and my disease.

1) Please understand that what I have is real and my limitations because of it
2) I can't fucking believe I need to say that.

 

[andre79]

First, Why having a psychiatrist disease should be an acussation? Have the people that actually suffer a psychiatric disease committed a crime or done something to get that illness? It's not like they want to be sick, the same that we don't want to be sick and neither of us are guilty of our illnesses. Many people that have an actual psychiatric disease can get 100% functioning with the right medication. I wish that was my case, but i was with an antidepressant for two years and did very little for me.

Anyway, just a comment, because we need some empathy and they need it too. Don't expect anyone to understand what you are going through, and just ignore the people that bothers you. Easier said than done, but it would be a shame to spend our little energy with people that don't deserve it.

 

[Forbin]

Smile. Hand them the 720 page (preferably hard bound) edition of Osler's Web. Say, "When you finish this, we'll talk."

 

[SOC]

First, Why having a psychiatrist disease should be an acussation? Have the people that actually suffer a psychiatric disease committed a crime or done something to get that illness? It's not like they want to be sick, the same that we don't want to be sick and neither of us are guilty of our illnesses.

1. Because the people who claim our illness is psychological don't mean genuine, serious psychiatric illness. They mean we're lazy or afraid of work/exercise and all we need to do is pull ourselves together and get back to work.

2. Because they want to treat a biomedical condition with psychological interventions. It's like trying to use a hammer to turn a screw. We don't want to be treated with psychological treatments because they don't work for our condition.

3. Many of them are pushing psychological treatments (CBT/GET) that are not only useless, but actually harmful to PWME. Even those not pushing those dangerous therapies mean by their accusations that we should engage in activities (more work, exercise, "getting on with life") that while possibly useful for people with psychiatric conditions, are harmful to PWME.

This does not mean, in any way, that we don't have empathy for people with genuine psychiatric conditions. In some cases their lives are as miserable as ours and their treatment isn't a whole lot better.

I have the same reaction to people who tell me I'm only sick because my diet is wrong. Or I just need to lose some weight and get a little exercise. Or I'm suffering burnout. They are ignorant, pushy people getting up in my personal business, whatever very wrong theory they're pushing.

 

[taniaaust1]

Actually one of them is a therapist which makes this so much more difficult. She thinks with that background that she knows more than my doctors I guess. Its like they have convinced themselves so deeply that part of this is psychiatric there's no reasoning

If she's a therapist you could try taking another tact with her. Ask her what she recommendds you do to recover. Then you can start harrassing her about that her suggestions didnt work or tell her you've already tried it, it may shut her up once she's out of ideas. Turn the tables and start bugging her for ideas.

People quickly do give up when their ideas are a complete fail after the second or third big fail, they usually shut up (its hard of their ego when they think they can help you with their ideas. I know as Ive had lots of doctors give up on me when their suggestions werent helpful to me at all or made things worst for me).

 

[taniaaust1]

Smile. Hand them the 720 page (preferably hard bound) edition of Osler's Web. Say, "When you finish this, we'll talk."

LMAO.

 

[Aerose91]

If she's a therapist you could try taking another tact with her. Ask her what she recommendds you do to recover. Then you can start harrassing her about that her suggestions didnt work or tell her you've already tried it, it may shut her up once she's out of ideas. Turn the tables and start bugging her for ideas.

People quickly do give up when their ideas are a complete fail after the second or third big fail, they usually shut up (its hard of their ego when they think they can help you with their ideas. I know as Ive had lots of doctors give up on me when their suggestions werent helpful to me at all or made things worst for me).

already tried that , added with my first doctor not knowing or finding what's wrong with me made her roll her eyes and tell me I was difficult because I was insistent on finding another doctor. She said I was "co-signing my own death" and yes, thats an exact quote.

 

[chipmunk1]

If she's a therapist you could try taking another tact with her. Ask her what she recommendds you do to recover. Then you can start harrassing her about that her suggestions didnt work or tell her you've already tried it, it may shut her up once she's out of ideas. Turn the tables and start bugging her for ideas.

People quickly do give up when their ideas are a complete fail after the second or third big fail, they usually shut up (its hard of their ego when they think they can help you with their ideas. I know as Ive had lots of doctors give up on me when their suggestions werent helpful to me at all or made things worst for me).

you can try that but then they will often blame you for not trying hard enough, not doing it right or "not wanting to get better"

 

[Aerose91]

you can try that but then they will often blame you for not trying hard enough, not doing it right or "not wanting to get better"

Exactly this. My friends closest to me would never stop pushing me to "push myself" and if I told them I just couldn't do it they would roll their eyes and classify me as difficult. Its like they thought I wanted to be like this and was playing it up for sympathy. Well, guess what guys, pushing myself is the whole reason I'm here right now- my dumb ass gave in to u and paid the price with my life

 

[SOC]

Exactly this. My friends closest to me would never stop pushing me to "push myself" and if I told them I just couldn't do it they would roll their eyes and classify me as difficult. Its like they thought I wanted to be like this and was playing it up for sympathy. Well, guess what guys, pushing myself is the whole reason I'm here right now- my dumb ass gave in to u and paid the price with my life

Exactly! Those people are NOT your friends. They have caused you physical and emotional harm. People that genuinely care about you don't do that. It's hard to face that people we thought were our friends are not, in fact, true friends, but sometimes we just have to face facts and move on. It's better to get the toxic people out of our lives and make room for real friends.

 

[Hip]

I generally take the position that people who want to comment negatively about my condition should do so from a position of knowledge or not at all. Anyone who starts in on me "knowing" what's wrong with me -- psychiatric issues, laziness, poor diet -- gets a pile of documents and a lecture. If you want to comment on my health, read this so you know what is actually going on. Then we can talk.

I like that approach.

I have used a similar tactic myself, which is this: I ask people to name just five of the symptoms and conditions that ME/CFS patients face, not including fatigue, because with a name like chronic fatigue syndrome, the fatigue symptom is a bit of a giveaway.

Invariably they will be unable to name a single symptom of ME/CFS, apart from fatigue, even though there are plenty to choose from: PEM, brain fog (which itself has any components such as memory problems, concentration problems, information processing difficulties, word retrieval problems), sound sensitivity, light sensitivity, emotional sensitivity, abdominal symptoms, bladder disturbances, orthostatic intolerance, chronic sore throat, allergies, headaches, muscle aches or pain, joint pain, swollen lymph nodes, blurred vision, chest pain, dry mouth or eyes, unrefreshing sleep, etc.

So then I ask them how they can have an opinion on something that they patently know absolutely nothing about. And I probe them on this point: I ask them if they are in the habit of offering the views on subjects they have absolutely no knowledge of; I ask them if they think it is sensible to proffer opinions in state of total ignorance of the subject matter.

This then rapidly turns the tables, and makes look a bit foolish.

 

[alex3619]

If you want to comment on my health, read this so you know what is actually going on

It could be argued that if they have the right to bug you about your health, you have the right to bug them about their ignorance. I have always wanted to say something like "Your ignorance and prejudice are showing" but so far I have refrained. What I usually do is take their great idea and explain how I have already tried it (although there are things like LP I have not and would not try) or explain how the science contradicts them.

 

[alex3619]

I have used a similar tactic myself, which is this: I ask people to name just five of the symptoms and conditions that ME/CFS patients face, not including fatigue, because with a name like chronic fatigue syndrome, the fatigue symptom is a bit of a giveaway.

Something I have wanted to say but have not had occasion to do so goes like this. When they talk of chronic fatigue, I will ask them: how many times have you fallen down or passed out from it? Hundreds? I have. Has your heart ever stopped from it? Mine has. Have you ever been so fatigued you could not count to three or even speak with people, or understand what they are saying. These have happened to me. Our more extreme symptoms are so far out of most people's experience they have no idea at all, and I am sure many of you have other extreme symptoms.

 

[Aerose91]

Something I have wanted to say but have not had occasion to do so goes like this. When they talk of chronic fatigue, I will ask them: how many times have you fallen down or passed out from it? Hundreds? I have. Has your heart ever stopped from it? Mine has. Have you ever been so fatigued you could not count to three or even speak with people, or understand what they are saying. These have happened to me. Our more extreme symptoms are so far out of most people's experience they have no idea at all, and I am sure many of you have other extreme symptoms.

Unfortunately we're still categorized under something called chronic fatigue syndrome. Injustices like this will not stop until we are separated from that term. I myself don't, and never, will associate with it. Hell I don't even associate with M.E. anymore because people just Google it and find chonic fatigue syndrome. I say that I have an acquired mitochondrial disease caused by a neuro-immune disregulation and that I'm classified under "neurodegenerative" (which is where Yale put me). I believe that this is an accurate description and I'm not embellishing anything. It also gives people a much different reaction.

 

[lansbergen]

that I'm classified under "neurodegenerative" (which is where Yale put me).

And there Laura Manuelidis does research.

 

[SOC]

I'm classified under "neurodegenerative" (which is where Yale put me).

Good lord! You have been officially classified under neurodegenerative (by Yale, no less) and people are still telling you your condition is psychiatric and you just need an attitude adjustment? Those people are seriously messed up. I assume you have told or shown them that info from Yale? What, they think their amateur diagnosis based on no evidence is better than Yale's? It sounds to me like you need to stand up to these bullies and tell them they have no idea what the F they're talking about and show them the evidence, and/or run away from them as fast as your ME body will let you move.

We, as a patient population, are still far too willing to let people bully and intimidate us. Yes, they believe all kinds of dreadful things about us because they are ignorant and lacking sensitivity. That's their attitude problem, not ours. We should be the ones criticizing them, not the other way around. We don't have to accept the false pictures they paint of us. Just because they believe it, doesn't make it so. We don't have to feel guilty because they are ignorant and stupid.

We are still in a big political fight with governments and the medical establishment which can affect how we live and how we are treated medically (or not). That battle is far from won. That doesn't mean we have to put up with crap on an individual level from ignorant people who want to shove their pushy noses into our personal business.

We have to convince governments and medical establishments of the seriousness of our illness. We have no choice but to continue pushing that boulder up the hill because they have control over our treatment. They aren't convinced, we don't get the right treatment.

Friends and neighbors are an entirely different matter. They are not writing and enforcing the rules about our treatment. They're just being obnoxious and invasive to no benefit to us. We don't have to put up with them. Yes, we want friends and family to understand and be supportive. Unfortunately, some of them don't want to be and we can't make them. They don't own us. They aren't entitled to tell us who we are or what we think or feel. We need to start telling individuals to stop being so F-ing rude. If they can't be supportive, or at least stop being emotionally abusive, then they need to turn around and get out of our lives pronto.

Yes, quite a number of my "friends" and family are gone from my life now. Some of my family has decided that maybe they want me in their lives more than they want to be critical of me and have come back into my life willing to be supportive even if they don't agree or understand.

Now I am surrounded by supportive people who believe (or at least pretend to ) that I am not well, but am doing the best I can to function. Some of them don't want to hear about the illness or treatment or help me with it in any way, but that's okay. They don't make my life harder. They don't criticize me (to my face at least). They don't get mad a me for not doing things I can't do. Others are more sympathetic. Nobody tries to make me feel guilty for being sick. Some people are helpful and encouraging. It's quite delightful, actually, to be surrounded only by supportive people. There was a price to pay, but it is well worth it.

 

[Aerose91]

Good lord! You have been officially classified under neurodegenerative (by Yale, no less) and people are still telling you your condition is psychiatric and you just need an attitude adjustment? Those people are seriously messed up. I assume you have told or shown them that info from Yale? What, they think their amateur diagnosis based on no evidence is better than Yale's? It sounds to me like you need to stand up to these bullies and tell them they have no idea what the F they're talking about and show them the evidence, and/or run away from them as fast as your ME body will let you move.

For the most part I already have cut them out, we talk very little. However these are the people who, when I first got sick (severe adrenal fatigue, before ME) were there for me and took care of me more than I ever could have expected. However when the ME hit they completely changed and when from 100 to 0 and that's when the psych accusations hit.

We don't talk much and when we do I try not to even mention my health but occasionally something will be said that triggers me again, letting me know they think even MORE now that I'm psychiatric because of how long I've been sick.

Because of how much they did for me in the beginning I owe them at least a second chance should they want to take a different approach, they just haven't done that yet.

 

[stridor]

OK. I may not gather much of a following with this.
I had psychiatric symptoms and still consider myself vulnerable. I had Bipolar forever and when I moved against mercury Bipolar was replaced with ME (after the fillings were removed in a less than optimal way).

With ME, I had an "all-low-monoamine depression" and that left when I started mB12. I am truly amazed by anyone here who does not have a psychiatric component to their illness.

We have myelin sheaths being chewed away, wonky REDOX systems and not enough BH4 assist in the formation of neurotransmitters. And I am not even going to touch all of the gut issues around here and the new ideas about mental health issues being tied into the gut biome.

I don't deny that I have presented with psychiatric symptoms. I tell them that they are the my brain's way of saying if is unhappy. My retinas made the same announcement by developing holes and my colon by growing over 100 polyps, and my skin by getting eczema and psoriasis, and my endocrine system by going off line......By now, they are attempting to drive away....

And I don't really give a s**t what people think about how my brain is functioning. Maybe that comes from decades of dealing with this sort of thing. But with Freddd's Protocol people have seen an improvement and are starting to listen. They know that I am on to something.

I'll end with this. Remember, I am too far away to shoot A percentage of the people here will not have full insight into the degree of psych symptoms/ depression/ anhedonia that they had until later in their recovery. Only then will tey perceive themselves
as others have. Truce??

 

[Dreambirdie]

Good lord! We, as a patient population, are still far too willing to let people bully and intimidate us. Yes, they believe all kinds of dreadful things about us because they are ignorant and lacking sensitivity. That's their attitude problem, not ours. We should be the ones criticizing them, not the other way around. We don't have to accept the false pictures they paint of us. Just because they believe it, doesn't make it so. We don't have to feel guilty because they are ignorant and stupid.

We are still in a big political fight with governments and the medical establishment which can affect how we live and how we are treated medically (or not). That battle is far from won. That doesn't mean we have to put up with crap on an individual level from ignorant people who want to shove their pushy noses into our personal business.

We have to convince governments and medical establishments of the seriousness of our illness. We have no choice but to continue pushing that boulder up the hill because they have control over our treatment. They aren't convinced, we don't get the right treatment.

Friends and neighbors are an entirely different matter. They are not writing and enforcing the rules about our treatment. They're just being obnoxious and invasive to no benefit to us. We don't have to put up with them. Yes, we want friends and family to understand and be supportive. Unfortunately, some of them don't want to be and we can't make them. They don't own us. They aren't entitled to tell us who we are or what we think or feel. We need to start telling individuals to stop being so F-ing rude. If they can't be supportive, or at least stop being emotionally abusive, then they need to turn around and get out of our lives pronto.

Yes, quite a number of my "friends" and family are gone from my life now. Some of my family has decided that maybe they want me in their lives more than they want to be critical of me and have come back into my life willing to be supportive even if they don't agree or understand.

Now I am surrounded by supportive people who believe (or at least pretend to ) that I am not well, but am doing the best I can to function. Some of them don't want to hear about the illness or treatment or help me with it in any way, but that's okay. They don't make my life harder. They don't criticize me (to my face at least). They don't get mad a me for not doing things I can't do. Others are more sympathetic. Nobody tries to make me feel guilty for being sick. Some people are helpful and encouraging. It's quite delightful, actually, to be surrounded only by supportive people. There was a price to pay, but it is well worth it.

Yes! That's my angle on this too. We can't allow ourselves to be defined by ignorant fools. It's a life and death situation many ME patients are facing, and if a practitioner doesn't get that, then it's the WRONG person to treat you.

As for "friends"... the people who treat you with contempt and criticize you for being ill are toxic. In my experience most of them do not ever change... it's very very rare that they will. The more time (and precious energy) you waste trying to convince, beg or sway them into to being nice could be much better spent on people who really care are deserving of it.