bananas

Helping Family Understand

34 posts in this topic

I just wanted to share what I did recently to help my family understand that what has happened to me over the past 14 years isn't because I have just been "slipping."  I have felt that they just haven't been able to understand exactly what this drug has done to me.  They hear me tell them, but they only had what I said to gauge it by.  So, I googled how Effexor (the drug I am on) affects people mentally.  I then googled a list of the side effects and highlighted all the ones I had.  After that I copied over 4 short postings from another site that showed other people were going through the inertia that comes with being on the drug.  I sent this in an email to them and they finally got that it isn't me and that I have been gone for 14 years because of the medication.  They are now more dedicated to helping me and are better in understanding what I am going through.  After all of these years, I finally feel like they are hearing me.

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Hi bananas,

 

I glad you found a way to help your family hear you and that they are now better positioned to give you the kind of backing you need to come off.

 

D

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I'm pleased for you, Bananas.

 

My family don't believe me but they pretty much don't hassle me now either, they can see it just doesn't work.

 

I tried to tell them but they said, "you are reading this from the internet, don't believe everything on the internet". The more I try and convince them the more upset I get and I just look unhinged which doesn't do much for my cause!

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Platinum, I so relate to what you are saying.  My family didn't really get it either at one point.  They don't have anything to reference it to in their experience.  It is like someone who hasn't smoked trying to understand what a smoker goes through to quit or someone who has never been depressed trying to understand what it is like to be severely depressed.  Eventually, they will get it when we emerge from this nightmare and are back to ourselves.  You are so close to being off.  I am so happy for you!  I know you are in that hard stage at the end, but you will be free of it sooner than you think.  

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Oops, sorry.  I just realized I called you Platinum instead of LoveandLight.  Picked it up from under your name.   :blush:

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That's very creative, bananas. Good for you.

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I sent copies of articles from this web site to my mother a few days ago. She said from what she read that I might be suffering from this protracted SSRI w/d. So I don't know it she's totally convinced. I guess given the fact that I was functioning on the meds and I did have PPD after the birth of my first child even though I was on meds during my pregnancy and took 10 weeks to respond to changing from celexa to lexapro. This fact makes her convinced that I do have mental health problems because of past response to meds. my family doesn't want to hear about it anymore, their thought is your mentally ill, you need meds and your just medication phobic and a if the meds don't work you need ECT. It's all in my head. That's my situation and it doesn't help.

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The fact that I went on them so young (17) and I already had anxiety due to, well I'm not sure what started the childhood anxiety, but then trauma and then last 8 years of nightmare on/off the drugs no-one believes me..I feel like I'm looked upon as mentally unhinged, unwell and always will be. It really angers me when family members say you need to be on them the rest of your life when they've never taken anything like this and haven't experienced that the side effects are just crap and keep you from functioning as well. It also annoys me when my mum says "but when you went on them you needed so something because you were suicidal". I keep telling her it was because of the withdrawal that I was like this. I don't know how many times she keeps saying this. But also it doesn't help that I expressed a suicidal thought when I was v young..about 12 but it probably as a result of puberty. I wasn't suicidal or even thought about it for many years after until I went on them at 17.

 

Honestly if I family member could experience what we experience for one day they would never 'nag' us again.

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I wrote a letter yesterday.  I posted it here:  how to talk to loved ones.  I gave it to my fiance yesterday and it was the best thing that I could have done. A load has been lifted off both of us now that he knows it's not him that's caused the change in me.   I'm not sure if I will give it to my mom and my siblings....not yet.  I'm not sure they will try to understand.  They will likely just say that I should stay on Zoloft....they won't understand that it actually wasn't working well any more (change to generic did that?) and it wont' work well again.  I have to get off it.  

Edited by Petunia
added url

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Advice for Family and Friends

 

I'm writing this post to try and help partners, family or friends understand more of what the person they love is going through and how much their help and support is needed at this time.

 

Let me start by saying I was one of those people who didn't know anything about withdrawing from psychiatric medications, or that they needed to be tapered. Antidepressant withdrawal syndrome was something I had never heard of.  I was as ignorant as they come about anything outside of what I understood. But my attitude changed quickly once I started experiencing it myself.

 

What we don't understand does not exist.

 

That really is the problem, if we see someone with a cold or a broken leg then they will get our sympathy as we have been through it ourselves and understand it's not pleasant. But on the other hand if it is something we have not gone through then we can't relate to it, so we may ridicule or not believe it possible.

 

This is the very reason so many people experiencing difficulties coming off their medication, or having stopped too quickly, suffer in silence. They feel the need to keep it a secret, fearing that people won't understand, that they may be ridiculed or labelled. This really is something that needs to change, the person wants nothing more than to be able to chat freely about how they are feeling, to gain help and support from those closest to them.

 

I was very lucky in that my family have been supportive. They don't understand what I'm going through, but they believe me. They never put pressure on me to be better or tell me to pull myself together, they are just there when I need to talk and listen without judgement.

 

Unfortunately, some people have family and partners who are less understanding. Who will say things like "Pull yourself together and stop all this nonsense"

 

But we don't want to be feeling this way, if there was a way to make ourselves feel better faster, we would jump at it. Many of us have spent a lot of time looking for alternative treatments and supplements, trying to speed up recovery from antidepressant use, but so far, nothing has proved particularly helpful.

 

A partner's lack of understanding can create more pressure and can hinder progress. Our body and mind need space to recover and this starts with an understanding partner and family, people who won't judge or create added stress.

 

I know how confusing and frustrating it might be to see that the person you love has changed and is not the one you knew or fell in love with. Trust me that person is still there, but at the moment they are just buried under symptoms.

 

When we are suffering so much, its very easy to take it out on those closest to us, sometimes in the form of outbursts or other uncharacteristic behavior. Its very frustrating for us to not be able to be the person we were before, we so much want to be who we used to be, for you and for ourselves.

 

So my advice to any partner or family member would be to not judge even though you may not understand, just believe what your loved one says. Trust me, no one wants to get better more than the person who is experiencing antidepressant withdrawal symptoms.

 

Your help and support is needed now more than ever. Put no pressure on your loved one, be there when they need an ear and try and be more patient and understanding, maybe even try and learn about the subject more. This kind of support can be a big factor in helping us recover.

 

To learn more start here:  What is withdrawal syndrome?

 

 

This post adapted from the Anxiety No More web site article of the same name - http://anxietynomore.co.uk/advice_to_partners.html

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Can anyone identify a post or good video on effexor withdrawal symptoms that i can send to my family to help them understand?

Thank you.

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I gave my family the recovery-road.org website. There's some good videos and Do's and Don'ts for caregivers of people going through withdrawal.

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My mother said the worst thing possible recently "everyone gets depressed now and again, you'll get over it" and then another corker "you always blame everyone else for your problems".

 

I told her where to go both times - wasn't pretty.

 

She has me pegged as one of those "depressed people".

 

My father is in la la land so I have low expectations of them. My brother is self-contained and under the thumb of his wife so has no involvement in anything.

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Great post Petu thank you 

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My mother said the worst thing possible recently "everyone gets depressed now and again, you'll get over it" and then another corker "you always blame everyone else for your problems".

 

I told her where to go both times - wasn't pretty.

 

She has me pegged as one of those "depressed people".

 

My father is in la la land so I have low expectations of them. My brother is self-contained and under the thumb of his wife so has no involvement in anything.

 

Hey JC - do you still live at home with your folks? If so, that would be REALLY hard...

If not? Limit your contact with them if they can't be supportive.

Hugs!

Cayperz

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Hi Cayperz,

 

No we don't live with my parents.

 

It's a generational thing, my mother was taught to "shut up and buck up", and that depression was just a transient thing. I also don't think she knows how to deal with me and doesn't want to accept that they are the cause of my illness.

 

I do keep my distance (sadly), and my father who suffers from Parkinsonism isn't really with it anyway.

 

JC

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I am lucky to have a supporting partner in this. She didn't fully understand until maybe 9 or 10months into it though and same with my mom. So the first year was extra difficult in that sense because of this.  Other than those two people in my life no one else comes close to grasping it.  Doesnt matter how much I try to explain it. I still have friends and family texting me to come play hockey when I can barely walk around the block or make myself a meal. But I realize how lucky I am to actually have two people who understands. 

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Hey Mort,

 

If we are lucky enough to have 2 people who we can talk to about WD then that's better than none.

 

Also, if we as an SA community can start our own support groups in our own countries, then we are most definitely able to help each other without the need to have relatives understanding our condition.

 

JC

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Hi Cayperz,

 

No we don't live with my parents.

 

It's a generational thing, my mother was taught to "shut up and buck up", and that depression was just a transient thing. I also don't think she knows how to deal with me and doesn't want to accept that they are the cause of my illness.

 

I do keep my distance (sadly), and my father who suffers from Parkinsonism isn't really with it anyway.

 

JC

 

Yeah - it's a tough situation, isn't it? Wanting to be close and share your experiences with the parentals to find that they don't want to (or can't) understand. These type of psych drugs weren't as varied or readily available when they were young and they certainly didn't know many in their peer group who would openly admit to having "problems". It's sad...

 

But the cool thing will be when you come out on the other side and you'll be able to confidently announce that you walked through hell every day because of these drugs and withdrawal and will be a shining advocate for others and educate those that don't have awareness. Your Mum will be the first one to realise, hopefully! Some people just need to see "proof" or they're just not that interested in variables in life.

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Hi Cayperz,

 

No we don't live with my parents.

 

It's a generational thing, my mother was taught to "shut up and buck up", and that depression was just a transient thing. I also don't think she knows how to deal with me and doesn't want to accept that they are the cause of my illness.

 

I do keep my distance (sadly), and my father who suffers from Parkinsonism isn't really with it anyway.

 

JC

"depression was just a transient thing."

 

According to the history on depression it use to be a transient thing a couple of years of rest at a sanatorium with peace and quiet decent food and flowers around and people went back to their lives it is only with the introduction of these drugs it has become a life sentence or at least a long term disability issue.  They are doing some work on this in the UK somebody posted a link to it the other day. 

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Hi Cayperz,

 

No we don't live with my parents.

 

It's a generational thing, my mother was taught to "shut up and buck up", and that depression was just a transient thing. I also don't think she knows how to deal with me and doesn't want to accept that they are the cause of my illness.

 

I do keep my distance (sadly), and my father who suffers from Parkinsonism isn't really with it anyway.

 

JC

"depression was just a transient thing."

 

According to the history on depression it use to be a transient thing a couple of years of rest at a sanatorium with peace and quiet decent food and flowers around and people went back to their lives it is only with the introduction of these drugs it has become a life sentence or at least a long term disability issue. They are doing some work on this in the UK somebody posted a link to it the other day.

Agreed.

 

The doctors telling me that I had a chemical imbalance and my brain was broken was a really bad idea for me to hold. The medication reminded me I was "sick" everyday. I was never sick! I was going through life, anxiety happens in life!

 

NOTHING in life is permanant.

 

I had real trouble seeing that whilst in the grips of the doctors and polypharmacy. It felt like I would never escape.

 

Changing my beliefs about depression and "bipolar", GAD and OCD was actually quite easy when I found the right information (not what I was spoon fed from doctors and social media). It did help.

 

My most useful thought through this has been "it will pass"

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It boils down to informed consent without the right information we were not correctly informed. 

peace 

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Going to jump on the "chemical imbalance" bandwagon and say that I carried that flag for years before I learned it's complete bullsh*t. I became the way I was due to trauma. Not my fault. Not my brain. Not genetics. TRAUMA ... And I am so so sick of hearing about how I will need to be medicated for life for my own safety. What is the purpose of life if you are a raging vegetable suffering severe medical complications due to side effects. Medications have certainly not made my life better.

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Going to jump on the "chemical imbalance" bandwagon and say that I carried that flag for years before I learned it's complete bullsh*t. I became the way I was due to trauma. Not my fault. Not my brain. Not genetics. TRAUMA ... And I am so so sick of hearing about how I will need to be medicated for life for my own safety. What is the purpose of life if you are a raging vegetable suffering severe medical complications due to side effects. Medications have certainly not made my life better.

I bought into the chemical imbalance lies too, and my problems were from trauma as a child but not as young as you Kate. We are taking control now and getting our lives back. :) 

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That was a wonderful site and video Petu I had not seen it before thank you. 

 

ps have you read recovery and renewal?

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Not about family and withdrawal, but about family/friends and tapering:

I just recently started saying something different to friends and family about my plan to taper off Cymbalta, because I've had some strong negative reactions when I use the words "going off" the drug.  I now say that I'm working to find the minimum effective dose, or the minimum tolerable and effective dose.  A U-turn conversion in responses: nothing negative -- people have offered understanding and support.  Of course, I don't  say that my minimum tolerable and effective dose might be zero. Heh! :P:D

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  ;)

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Whatever works that is how we survive this 

peace

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A friend of mine in response to me telling her about what I've been going through told me that most husbands would have left me by now. It hurt so much. I am feeling really awful hearing this.

 

I wouldn't have gotten that from someone if I had cancer. I guess they're blaming me, blaming my ability to cope with this, thinking little of my ability to have anything to offer my family during this time. That really hurts. My husband is getting out on a pedestal while the dig me a hole. That's what it feels like.

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Help777 - you could take interpret that comment as putting you down. That's only one interpretation though, regardless of the intention of the person who said it.

 

You could also interpret your friend's remark as saying "You are an extraordinary person married to a good guy. I can tell from the way he's been with you through all this that he loves you very, very much. You deserve it."

 

And, she's probably wrong about "most husbands" would do.  It's only an opinion. IT IS NOT. THE. TRUTH.

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Thank you, Scallywag for reframing this for me. You are right. I've always been someone to take personally what someone is saying, care too much about what others think, and get hurt easily. However since wd that has been magnified x100. I will read into someone's comments and stew about it, causing myself pain and suffering from this tunnel vision. I guess it's a form of a neuro emotion. I don't want to be so negative and be thrown into the depths of despair because of what a friend or famiky member thinks thinks, or torture myself by reading into what someone says. I have to stop expecting people to understand what I am going through. My life work I think. But like I said this has been incredibly that much more difficult since wd. Thanks for being there.

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Perhaps you can help me reframe this because I am so upset.. I just found out my husband told his parents that I have wanted to die and go down to the basement to hit myself. I thought they were treating me awkwardly when I saw them yesterday and now I know why. I know my husband needs outlets and we have agreed on a few close friends of his that would be safe people for him to talk to. I supported him talking to hus parents and brother, but I feel so humiliated that he has shared this part with them. They dont understand and are worried about the children. They look at me differently and I dont see love in their eyes. Naturally they are worried about my husband and kids. I dont know how to stay in his family and see them again. I am ashamed and humiliated. It was one thing

I didnt want my husband sharing with his family. Does anyone else face this experience?

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I am someone who is in the same position as your husband, as I am in the role of a carer of a young adult child now going through severe AD withdrawal.

 I can completely understand how upsetting it must have been to have your husband tell your parents about your condition, and to then have his parents look at your strangely.  (Is it at all possible that you are highly sensitized right now to negative emotion and that you might have overblown a bit how his parents really feel/think about you?  Don't mean to invalidate your experience at all, just wondering.)

Of course you would want and ought to receive all of the love, support, and trust of your husband's family; it is awful that on top of everything else you had to feel that your privacy and respect were breached. At the same time, it must be incredibly stressful to be in the position of your husband, whom I would guess loves you very  much and is very nervous about the unpredictable nature of this syndrome. Given this, it might have felt almost impossible for him to refrain from telling his parents about what you are going through. I am sorry to hear that this brought you more pain.

 As a carer I cannot see inside my daughter to really get how much she is suffering and how hard it is for her to act normal.  But I am witnessing it from the outside in, and the pain of being ignored and rejected by the person most precious to me, and the constant worry and fear of her getting suicidal, has put me at my breaking point.  We all need to publicize what is being inflicted upon people by the psychopathic drug industry and their drug-rep and doctor enablers, and we give each other--sufferers and carers--tons of understanding, compassion, and support.

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