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GiaK

Support for those in withdrawal who struggle with family & friends not understanding

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GiaK

By Baylissa Frederick

link to post on beyondmeds.com -- http://wp.me/p5nnb-aO2

 

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One of the most challenging and frustrating aspects of withdrawal is that feeling of being misunderstood, unsupported and isolated. If someone has diabetes, dystonia or other chronic illness or experiences a life event such as a bereavement, people will more often empathise and offer support. They understand these issues – the required dietary restrictions, medication, etc., and they will be able to tell you the stages of grief. Support of every kind is forthcoming because there is enough awareness, shared through every medium, on these topics.

 

Even an addiction to cocaine, alcohol or heroin receives more attention and holds more credibility than protracted benzodiazepine and antidepressant withdrawal. It is saddening indeed that those in withdrawal are so terribly misunderstood.

 

As the days turn into months, sometimes years, some of you may find that friends and family become less accessible and less understanding. No amount of explaining, giving of information and pleas for empathy and understanding seems to work. Withdrawal is so complex, it borders on being unbelievable. And because the symptoms mimic so many psychological and physical conditions, somehow there is more of an inclination for some family and friends to offer a diagnosis and guess what else could be wrong, than to just trust what you are saying and give the support needed.

 

If your friends and family could appreciate just how brave you are to endure and cope with the intensity of such frightening symptoms, they would be so proud of you. If they knew that you haven’t even told them half of what you are going through, they would appreciate how strong you really are.

 

But, you must understand that until you mentioned withdrawal and the people you have met on the Internet, they had no clue. More than likely your doctor has confirmed with them that it’s “all in your head” or “you’re in denial about the return of your anxiety, depression, whatever…”

 

It doesn’t help that they become impatient and frustrated themselves when you make excuses to avoid going out or you are so out of it that you forget an important birthday or anniversary. Of course they want you to be well again and this is why they become fed of waiting. Even those who were supportive in the beginning, as if having had a time-frame in mind, lose interest if symptoms become protracted. They just cannot believe a prescribed drug could cause so much trauma and devastation. Of course, you must be imagining it all.

 

I know it hurts when instead of being supported you are told:

  • “You need to snap out of it.”
  • “Don’t be silly. How could medication make you this sick for this long?”
  • “But you don’t look sick to me.”
  • “Why don’t you stop feeling so sorry for yourself?”
  • “You sound like you’re having a nervous breakdown.”
  • “I think you’re in denial. You have a problem and you should get seen to.”
  • “When did you lose your motivation and become so lazy?”
  • “If you get a job and get busy, you’ll feel better.”
  • “If you stop thinking about it all the time, you will get better.”
  • “There are days I feel just like you but I get out of bed and go to work anyway. Why can’t you do the same?”
  • “Stop being so negative. No wonder you feel the way you do.”
  • “You say you’re sick but you went out yesterday. Today you’re acting like you’re dying. I just don’t get it.”
  • “Maybe something else is wrong with you. Why don’t you go back to the doctor’s?”
  • “You need to go back on the medication. Looks like you needed it because you’re a mess without it.”
  • “Remember, you had anxiety before. Maybe it’s just that it’s come back. You need to deal with it and stop hanging out on the Internet with that lot.”
  • “Are you sure you’re not just depressed?”
  • “I think it’s all in your head.”
  • “Pull yourself together.”
So, sadly, rifts in relationships with friends and family, being accused of malingering and indolence, are just some of the issues that withdrawal can bring with it. This is in addition to coping with the most bizarre and cruel symptoms. Only acknowledgement by the medical profession along with general public awareness will change this. Thankfully, more people are becoming involved in this cause and things will eventually change.

 

In the meantime, understanding that your family and friends’ inability to relate is normal, will make you less frustrated and more accepting. Remember, to them this is a phantom illness – an exaggeration or even a figment of your imagination!

 

Not all friends and family members are unsupportive. Some have been nothing short of amazing, loyal and dependable, despite not fully understanding the complexities of withdrawal. If you have one such person in your life, be thankful. There are many who don’t. If you are isolated and without support, I am sorry. Please know that you are not alone. Reach out and you will find people who are willing to help.

 

The best thing to consider, which I hope will be comforting, is that unlike the person with a chronic life illness, you are going to get better. Everything you are enduring now, is just for a time. There are many health conditions for which there is no cure and a bereaved person will never get that relative back.

 

In your case, one day your relatives and friends will see you as you were, or possibly even better than then, and they will realize that you were right all along. You were simply in withdrawal and all you needed was for them to listen to you, believe and trust you, and give you the support you need.

 

As hurt and frustrated as you may feel now, when this is over, the feeling of surviving withdrawal against insurmountable odds – of overcoming such a cruel, painful and frightening experience – will be much more powerful. You won’t remember a lot of what is happening now and you will be so proud of yourself, it won’t matter who believed you or who did not. You kicked withdrawal’s butt and that makes you as close to invincible as one can get.

 

This was first posted on Baylissa’s facebook page: Bloom in Wellness

 

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Baylissa Frederick is the author of Recovery and Renewal: Your Essential Guide to Overcoming Dependency and Withdrawal from Sleeping Pills, Other ‘Benzo’

and Antidepressants

 

She is a benzo survivor and is one of the many lovely people who has helped me greatly over the years. I wrote about how we all support one another recently. See: Peer support? This is the real thing. Free of institutionalization. (psych drug withdrawal)

 

More posts by Baylissa Frederick on Beyond Meds:

Please do not attempt to discontinue psych drugs without first very carefully educating yourself on the risks involved so that you might minimize the chances of developing grave iatrogenic illness if you decide to withdraw: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

 

See also:  The Isolation Collection: about the isolation and sense of abandonment many people deal with when sick with protracted withdrawal illness.

 

original post: http://wp.me/p5nnb-aO2

Edited by scallywag
edit title, move link to post

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alex

I have her book in my nightstand drawer.

She is a sweet, brave supporting human being.

I really reccomend her book.

 

Thank you Gia.

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WinningThrough

This is great Gia and I can so relate as I'm sure can many others here.

 

I spoke to a friend yesterday. I had actually explained my situation to her previously. She asked if I'd thought about acupuncture (which is something I'd eventually like to try) and I said it was something I was considering although right now it was hard for me even to get from my bed to the bathroom. She said why, is that because you're in physical pain? Even though I'd already told her I live in a constant state of fear for no reason and constant inner trembling etc and simple tasks are almost impossible. It's not news to her. I tried to explain it to her again and she said what are you scared of? I said I'm not scared OF anything, it's just a state caused by the drugs. She said she didn't believe that and the fear was within me.

 

She also said she thought I'd given up and it was like I couldn't be bothered. (I've gone through eight months of sheer hell and kept going and going and going..nothing could be further from the truth.) I said I was recovering from a brain injury which wasn't something you could just fix overnight and she said she didn't believe my brain was injured, it was all coming from me. She said she thought I could get better within a week if I wanted to. Does she think I WANT to be ill?

 

This is the same friend who was in a really bad way for two years and said that people had said really insensitive things to her during that time. I remember talking to her many times during those years and there was no way in that state she could just snap out of it. I thought she would understand.

 

Another friend used the term akathisia in a really sarcastic, condescending way as if it was just a term I'd plucked from midair and labelled myself with. She once said how does your partner cope when you're like this? as if I put it on to get attention and am being a complete nuisance. She said she remembered feeling the way I did when she was on a short course of antidepressants a year ago. I know that's completely untrue because when she mentioned it to me a couple of times in the past she said they helped a bit and numbed her a little. That was it! If she'd had an adverse reaction, I would know about it!! She had no problems coming off them either. I find it so insulting! I'm sure some friends think I'm just putting all this on. It hurts so much.

 

I do have some very supportive friends who do understand it. As time goes on though, people are disappearing. I guess because I came off the drugs, they expected me to get better and because I'm even worse now, they think it's all in my head.

 

People just want to fix me. One said they wanted their old friend back. Well guess what, so do I!

 

Sorry for the rant. We have to go through horrific drug reactions, withdrawal and don't get any relief and on top of this, we get friends saying insensitive things to make us feel so small. I got through a very bad bad of anxiety a few years ago with only the help of propranolol (I've no idea if that drug did anything or not) and was so proud of myself for doing it. Friends should remember that I did that and know that if I was able to, I'd do it again. I know these friends would be absolutely floored if it happened to them and in all honesty wouldn't have been able to achieve as I much as I have in the last eight months.

 

My boyfriend says that it's completely untrue that I've given up and was upset by the things shed said to me. He know the only thing I want is to be better.

 

What all of us need more than anything is for people to completely get what we are going through and not try to fix us or make us feel bad if we don't just snap out of it.

 

I was unable to go out with a group of friends recently. One told me she'd said to another it was a shame I couldn't be there. His reply was It's like that with bi-polar. I don't have bi-polar! She corrected him on that one!

 

Rant over!

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GiaK

yup...those are all common sorts of responses...eventually I started caring a lot less about what people said and thought and I also learned to stay away from people who were totally clueless until I was in a better condition to put up with their insensitivity.

 

hang on...it does change :)  

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Morphologie

Thank you so much for this, Gia and for what you shared, Alex and WinningThrough. 

 

This is exactly what I am going through.  I posted an ad on craigslist trying to start an in person support group so I can tell my story and get support for it in my area but I haven't got any replies.  I feel so isolated.  I feel like people disbelieve me and chalk it up to 'mental illness' when I try to tell them about what I'm going through and what I have experienced and all the things I notice.  It really does hurt. 

 

I feel like I made a huge mistake turning to the mental health system years ago for help, security and hope in my life, although when I younger, the 'therapy' I found helpful was more about feelings, the concept of the inner child, 'healing' vs. treatment and how the past affects you than about changing yourself through medication and cognitive behavioral therapy. It seems like everything got cut off and turned into fixing you not healing you.  I don't believe this crap about 'evidence based' treatment being better, either.  Whose evidence?  No mine, that's for sure.  No one seems to take my ;evidence' as anything meaninful.

 

I yearn so much for someone to listen and understand.  Not just about my withdrawal experience, which has been nothing short of traumatic, but about what was going on before that, why I turned to drugs in the first place.  I was hurting so much and did not know how to communicate and cooperate successfully with other people.  I think I may have some social deficits or something, aspie-like. I'm a litlte bit like that guy "Monk" from that show only I have not figured out how to make my 'special skills' a way to support myself and get recognition from society.  My way of understanding things seems to differ from a lot of people and I want to find a way to fit in and be part of society without having to cut important parts of myself off to survive and feel like I belong.

 

I have no idea how to do this but part of it, I think is going to have to involved expanding my empathy and understanding of other peoples' feelings and experience.  Like for example, how the article says it's normal for people to react the way they do when we try to tell them.  I need to get more insight into this (understanding other people's feelings and perspective) so I don't keep walking into painfiul conversations that make me feel like giving up because no one believing and supporting me.  I don't want to lose any more good people out of my life because I don't understand them and they don't understand me.

 

I've been involved in the mental health system since I was 22 years old (off and on) and now I am 46.  I'm on SSI for debiliating mental illness for 3 years now.  I have 6 diagnoses (symptoms and descriptions that for the most part, I identify with) but I'm determined to dig myself out of this hole.  Partly because it's not a safe place to be. It was supposed to be a rest and some support but I have not rested.  I've become more ill since I've been on SSI and went to a program for personality disorders than I ever have been in my life. I got deeper and deeper into an illness state of mind and now I am riding around on a bus for mentally ill people and go on 'outings' by good, well intending people whom I at least as intelligent as (though have not been as fuctional as) patronizing me, which futher assualts my self esteem and idea of myself. 

 

I think things are going to get worse not better in the mental health system personally and I want out before it gets any worse.  I almost ended up incarcerated and forcefully injected in the hospital last year just for having my own ideas and not being willing to just listen to them and not wanting to take medications even though I was in complete distress.  Part of that was because they did not diagnose my akathisia and explain it to me. I had no idea what was happening to me.  They could have put me on inderal or clonazepam right then to stop the akathisia but they kept saying it was 'just my anxiety."

 

They had no way of helping my distress without drugging me in the first place, either.  Even though my father is dying, my mother has abandoned me and attacked me in my greatest hour of need, I was in an abusive relationship with a dangerous man for 3 years which put my life and sanity at risk, my teenage son went through crisis and rage episodes when he became teenager and I was a single mother and didn't know how to deal with it.   All that to work with, and the only answer they could come up with was let's drug her so we don't have to deal with this mess?  What has happened to this world and the people who will sit with you when you need to cry and be have someone hold you?  This world is a hard place, we all needs things like that sometimes.

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GiaK

I'm sorry Morphologie...you clearly have more on your plate than anyone should ever have...yet, you are recognizing the problems and you sound pretty clear to me...I know that things can and do turn around and it's much more likely if we can pay attention and watch what is really happening...it can bring a sobriety and clarity that is actually quite beautiful even in the midst of a lot of pain. 

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Morphologie

I'm sorry Morphologie...you clearly have more on your plate than anyone should ever have...yet, you are recognizing the problems and you sound pretty clear to me...I know that things can and do turn around and it's much more likely if we can pay attention and watch what is really happening...it can bring a sobriety and clarity that is actually quite beautiful even in the midst of a lot of pain. 

Thank you, Gia.  That's a nice thought. I think that I need to stop trying to tell people what this is like to get sympathy/empathy, because usually what happens is they just end up saying something that makes me feel worse, because now on top of everything else I feel stupid; but it's hard to stop myself because I really want someone to understand and maybe comfort me.

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GiaK

omg...yes, and I am here to tell you I still do that crap with my husband...

 

instead I need to learn to sit with the loneliness in meditation...I've seen the power of that to transform stuff... but we have a massive amount of pain to integrate...we really do.

 

be kind to yourself...I"m working on it too.

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Morphologie

 

instead I need to learn to sit with the loneliness in meditation...I've seen the power of that to transform stuff...
 
Yeah that really sounds like the way to go...what a great thing it would be to turn something bad into something good.  I'm really grateful that I'm starting to feel something again when I pray or think of God. For the longest time I felt absolutely nothing and it was part of the hell the drugs put me into.  Pretty weird experience to feel like you've been in a hell and then can't even communicate what it was like, it's like a nightmare of needing to tell people so badly, but you're mute. Well, at least we know it! :) Thanks, Gia.

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hacilar

This whole post, all these replies: yes, yes yes.  My family just can't grasp my situation, and now I'm essientially estranged from them all...I come from abuse, too.  What I would do if they just could manage to give a crap...it just seems to me that every single person I've ever loved has thrown me under the bus.  

 

Are all young adults narcissists now?  When I can't find my empathy, I worry about this also...but then why does my oldest son send me anonymous subscriptios to 'Adbusters'?-it's because what's happening out there in the world is tearing me up inside.  

 

Morphologie, you are not the only one by any means, I hope you have at least one good friend who can talk you down when you get to that deep dark place.  We are not meant to be isolated and alone.  It's a basic human need to want to belong, to be loved and to love.  Maslow's hierachy of needs makes sense to me, and my (our) basic needs aren't being met...I resent that I have to do it all by myself.

 

I have started meditation; I find it very difficult.  But I'll keep trying.  I've also gone to a coupla of NA meetings; not my situation, but the people there are warm and friendly...they are actually trying to make themselves better people-a rare commodity when I look around me.

 

The feeling I get when I try to explain to someone what I'm going thru and why I'm so incapacitated (Klonocide withdrawal syndrome) I can feel right now how my stomach tightens, and how I just want to slink away as I see their faces register cynicism and doubt...how they think you're just nuts...it hurts to be dissed continually.

 

How many of us are out there?

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Claudius

Very recognizable those points, I was still relatively lucky that most of my friends believed me as did my mom, but my sister literallry threw almost all those points at me and still refuses to believe that my ordeal was due to the Seroxat, which she by herself uses now for more than 10 years.

THe book sounds great but for me it is a bit crying over spilt milk...  but probably a good resource for people at the beginning of their tapering process.

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hacilar

I just sprung for the $ for Bliss's book...even tho I'm in a window now, I can feel it starting to shut and I will need something to comfort me when the wave hits again.

 

Wish I could just forget I even had kids...

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FightingForHope

"It's all in your head" love that one <_< ... Or, "you've convinced yourself that's what's going on" - which is especially painful and confusing to hear  :(  

Thank you GiaK, great link; Baylissa is such a source of warmth and kindness - her videos are good too!

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Prohealer

Defintely will buy this book soon. Looks very interesting and am currently going through something similar as whats described here. My mother is starting to stop supporting me and guilts me when im feeling paranoid, agitated etc. It led to days of drama and im now feeling the consequences because of that but im now working on calming my CNS down again to bring myself out of this wave.

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powerback

I believe we just have to accept what's happened is just way to complicated for them to understand .I Have recently had a friend that believes I'm to much trouble than its worth .

 

I try not to judge him and accept it, very hard but my health has to come first and constantly trying to get people to understand our pain can be damaging to us and stress us out.

 

we have to realise these people around us are still in the mind set of trusting and believing the powers that prescribe these drugs.

 

I have great support from my mother but it took a long time for her to get out of the mind set  of doctor knows best ,there was a lot of arguments over me not believing I was being believed ,its very destructive .

 

from my experience its best to stick to this site  and guard yourself out in the world because  we are very fragile with our symptoms 

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powerback

oh forgot,depending on our age group ,our family and friends can have there own stuff to put up with like kids ,work ,relationships.

 

I  was so angry at the start what happened to me  I wanted everyone to listen but we don't get  the reaction we want cause they could never understand.

 

so try not to judge them ,that's my experience

 

this site is were your answers are for support

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powerback

Thank you so much for this, Gia and for what you shared, Alex and WinningThrough. 

 

This is exactly what I am going through.  I posted an ad on craigslist trying to start an in person support group so I can tell my story and get support for it in my area but I haven't got any replies.  I feel so isolated.  I feel like people disbelieve me and chalk it up to 'mental illness' when I try to tell them about what I'm going through and what I have experienced and all the things I notice.  It really does hurt. 

 

I feel like I made a huge mistake turning to the mental health system years ago for help, security and hope in my life, although when I younger, the 'therapy' I found helpful was more about feelings, the concept of the inner child, 'healing' vs. treatment and how the past affects you than about changing yourself through medication and cognitive behavioral therapy. It seems like everything got cut off and turned into fixing you not healing you.  I don't believe this crap about 'evidence based' treatment being better, either.  Whose evidence?  No mine, that's for sure.  No one seems to take my ;evidence' as anything meaninful.

 

I yearn so much for someone to listen and understand.  Not just about my withdrawal experience, which has been nothing short of traumatic, but about what was going on before that, why I turned to drugs in the first place.  I was hurting so much and did not know how to communicate and cooperate successfully with other people.  I think I may have some social deficits or something, aspie-like. I'm a litlte bit like that guy "Monk" from that show only I have not figured out how to make my 'special skills' a way to support myself and get recognition from society.  My way of understanding things seems to differ from a lot of people and I want to find a way to fit in and be part of society without having to cut important parts of myself off to survive and feel like I belong.

 

I have no idea how to do this but part of it, I think is going to have to involved expanding my empathy and understanding of other peoples' feelings and experience.  Like for example, how the article says it's normal for people to react the way they do when we try to tell them.  I need to get more insight into this (understanding other people's feelings and perspective) so I don't keep walking into painfiul conversations that make me feel like giving up because no one believing and supporting me.  I don't want to lose any more good people out of my life because I don't understand them and they don't understand me.

 

I've been involved in the mental health system since I was 22 years old (off and on) and now I am 46.  I'm on SSI for debiliating mental illness for 3 years now.  I have 6 diagnoses (symptoms and descriptions that for the most part, I identify with) but I'm determined to dig myself out of this hole.  Partly because it's not a safe place to be. It was supposed to be a rest and some support but I have not rested.  I've become more ill since I've been on SSI and went to a program for personality disorders than I ever have been in my life. I got deeper and deeper into an illness state of mind and now I am riding around on a bus for mentally ill people and go on 'outings' by good, well intending people whom I at least as intelligent as (though have not been as fuctional as) patronizing me, which futher assualts my self esteem and idea of myself. 

 

I think things are going to get worse not better in the mental health system personally and I want out before it gets any worse.  I almost ended up incarcerated and forcefully injected in the hospital last year just for having my own ideas and not being willing to just listen to them and not wanting to take medications even though I was in complete distress.  Part of that was because they did not diagnose my akathisia and explain it to me. I had no idea what was happening to me.  They could have put me on inderal or clonazepam right then to stop the akathisia but they kept saying it was 'just my anxiety."

 

They had no way of helping my distress without drugging me in the first place, either.  Even though my father is dying, my mother has abandoned me and attacked me in my greatest hour of need, I was in an abusive relationship with a dangerous man for 3 years which put my life and sanity at risk, my teenage son went through crisis and rage episodes when he became teenager and I was a single mother and didn't know how to deal with it.   All that to work with, and the only answer they could come up with was let's drug her so we don't have to deal with this mess?  What has happened to this world and the people who will sit with you when you need to cry and be have someone hold you?  This world is a hard place, we all needs things like that sometimes.

 

this is astonishing abuse of power .is there actually a hope for humanity .

I heard a saying once ,you can judge a country by its prison system , judge it by its mental health system also I believe .astonishing how disgusting these people are .they wont even admit they haven't a clue .

I can relate to the character monk, in the last few months I've got depersonalization and feel very strange and disconnected .   

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Rob66

With the exception of my wife and you fine people, there isn't another living soul that knows I've been on Zoloft for 22 years. It's always been a very personal thing for me. I don't care for the stigma it creates so I avoid it by keeping it a secret. My wife understands I take it but would never fully understand its effects unless she experienced it first hand. Same goes for the tapering process. She knows I'm tapering but has no clue what it's all about. As long as I'm not a raving lunatic while weaning, I don't think it matters much to her. Some days I want to talk about it and find I have no one to talk to. That part can be very hard. At least here there are others that understand.

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Dancingspirit90

Thank you for this. 

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