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What do you tell people?


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I'm  less social these days in BWD - more likely  to want to stay home than to go out.  I like social interaction but too much leaves me very drained.

Not all the time but if I'm in a wave I'd like to have a way to say "not today" without disclosing details about what I'm going through.  Only my closest family and a couple of close friends know.

Does anyone have just the right thing to say?

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I'm  less social these days in BWD - more likely  to want to stay home than to go out.  I like social interaction but too much leaves me very drained.

Not all the time but if I'm in a wave I'd like to have a way to say "not today" without disclosing details about what I'm going through.  Only my closest family and a couple of close friends know.

Does anyone have just the right thing to say?

I did tell the truth in the beginning. Thar bws cause symptoms that made me housebound. 2years later nobody listen anymore. So I dont say much or anything just if someone ask how I feel I ask will you listen to me?

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I tell most people that I’m dealing with severe insomnia. I get the usual suggestions and questions about melatonin, sleep apnea, and the like, but it’s easier to deal with than benzo withdrawal. Everybody at my gym thinks I have severe insomnia and adrenal fatigue, which is not entirely false.
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Only my immediate family and my 3 bestfriends know what I am going through. Around everyone else, I'm pretty much faking it. But I really don't go out much anyway because I'm just not that social. Never was.
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When being asked  why not? I tell them I' m not feeling well. And that's no lie! I decided not to talk about BWD anymore,  no one can begin to understand what it's like. Talking about it could lead to people avoiding me. Only some people close to me get the occasional update, when I think they need to know something has changed or I was feeling worse. And only for a couple of minutes. After that we talk about other subjects. Distracts me from the suffering as well.
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I tell them I have chronic migraines, people tend to understand.  I have a lot other sxs going on

 

they wouldn't understand , so I don't tell them.

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I'm at the point in WD where I tell the truth with everyone. My close friends and family know all the details. My job knows enough details to understand why I have good and bad days and sometimes need to take time off. With everyone else it doesn't really matter. I'm a pretty private person, so I only explain enough details to help people understand why I'm not my normal self.
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I tell everyone im working...a LOT:) so funny because it's just the opposite, i was not able to work for 19 months..ive been basically living this life full of lies, only my 3 closest people know what im going through, nobody else seems to notice really, my mom says i look fine on the outside, so i fake it till i make it. Funny how most people are so into themselves, id think for sure somebody would notice something or catch me on a faking lie, but no, as long as i ask them how they are doing and take the conversation to be about them nobody notices anything
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I tell people I stopped taking a medication and it’s taking a toll on every part of my body. Some people I tell more specific details but for the most part I keep it short and simple.
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Most of my friends and family accept that I have chronic fatigue syndrome, but I think they are ambivalent about whether benzos had anything to do with it. They do believe me that I’m not well at the moment and can’t do that much, so that’s good enough for me.
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People ask "how are you?" but they do not really expect anything but "fine" in reply. I usually just turn it around and ask how they are and they are off on their favourite topic - themselves.
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I decided early on not to tell people, even my friends.  Because I live in an ultra-conservative town where the term "withdrawal" would automatically mean withdrawal from street drugs.  What I found out was that no one understands what benzo withdrawal is, even our doctors.  The doctors refuse to believe it. Even our family doesn't understand all the time.  My sister refuses to believe me and insists I'm going through menopause (I wish). So, I don't talk about it.  They can come to their own conclusions; honestly, a sickness like the flu is more acceptable to the general public than benzo withdrawal.  Because if anyone knew, everyone would gossip about it.  So I shut up early on. 
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Yes, it is pretty discouraging. They think you're faking it or that you're a drug addict. I tried explaining to my sister also and she wanted to know why I couldn't just go to the doctor for a pill to make it go away. Now I just say "you know" when she asks how I am. As harsh as this sounds, I don't think that she is interested in how I am - she wants to feel better about herself or superior or whatever. I don't have the energy to try to explain to her anymore.
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I think I'm more concerned about my professional reputation too.  If anyone put the term withdrawal in front of my name, I would never get a job ever again in this town. My immediate family knows, and that's what matters.  The general public does not have a need to know.  If they think I broke my leg, great.  People ask me how I'm doing, and the most I can give them is a vague answer.  Because the truth is so much more scarier than they have time for. That sounds bad, I know.  We think truth and transparency should go hand in hand.  Sometimes it does not.  And it's our health, so we can keep private what we want to keep private.
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Somebody mentioned here that they tell people have severe insomnia and adrenal fatigue, I think I'm going to steal that if thats ok, i really like that one)
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Somebody mentioned here that they tell people have severe insomnia and adrenal fatigue, I think I'm going to steal that if thats ok, i really like that one)

 

That’s me! I also wanted to note that I don’t go around telling anybody anything. Most people don’t know. They probably just think I’m rapidly aging.  I only explain in certain situations like to my friends at the gym who I don’t see as much now. But really, insomnia and adrenal fatigue ARE what’s wrong with me, so I just go with it. I don’t feel like explaining benzos to friendly acquaintances. Close friends and family know.

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Somebody mentioned here that they tell people have severe insomnia and adrenal fatigue, I think I'm going to steal that if thats ok, i really like that one)

 

That’s me! I also wanted to note that I don’t go around telling anybody anything. Most people don’t know. They probably just think I’m rapidly aging.  I only explain in certain situations like to my friends at the gym who I don’t see as much now. But really, insomnia and adrenal fatigue ARE what’s wrong with me, so I just go with it. I don’t feel like explaining benzos to friendly acquaintance. Close friends and family know.

yea that sounds like a good idea :thumbsup:
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The truth.

 

I have basically always told the truth, too. I tell people I have brain damage. It's not something you can't heal from, it can just take a long time.

 

If they want proof, I can point them to studies. There is plenty of circumstantial evidence and some that is direct. There is a neuroscientific explanation. There is an easy explanation for doctor denials. My condition of sleeping 2-4 hours for 18+ months came as a total surprise and was entirely medically induced. I don't plan on accepting blame for it and I'm definitely not going to take any shit over it if I can't do normal stuff like work 8 hours a day etc.

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I have basically always told the truth, too. I tell people I have brain damage. It's not something you can't heal from, it can just take a long time.

 

If they want proof, I can point them to studies. There is plenty of circumstantial evidence and some that is direct.

 

Hello, Data_Guy.  I would be very interested in these studies! Care to share citations?  Libertas

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I have basically always told the truth, too. I tell people I have brain damage. It's not something you can't heal from, it can just take a long time.

 

If they want proof, I can point them to studies. There is plenty of circumstantial evidence and some that is direct.

 

Hello, Data_Guy.  I would be very interested in these studies! Care to share citations?  Libertas

 

Hi Libertas,

 

I've got the studies on my computer. I'll just find links to them and then it will take me awhile to summarize them and pull quotes. My concentration and ability to work for any amount of time consecutively is not the greatest.

 

In the meantime, here is a post I did awhile ago comparing the symptoms of post-concussion syndrome to benzodiazepine withdrawal syndrome:

 

"Take a listen to this doctor explaining post-concussion syndrome. I think you may recognize the symptoms list. More evidence that the benzodiazepine withdrawal syndrome is a brain injury:

 

Here is the list from the Mayo Clinic website: https://www.mayoclinic.org/diseases-conditions/post-concussion-syndrome/symptoms-causes/syc-20353352

 

Headaches

Dizziness

Fatigue

Irritability

Anxiety

Insomnia

Loss of concentration and memory

Ringing in the ears

Blurry vision

Noise and light sensitivity

Rarely, decreases in taste and smell

 

 

Not a great job by the medical profession to leave people with a brain injury and then let them figure out for themselves that they have one and how to treat it. The claim that it is some form of mental illness is extremely harmful, not least of which because it almost guarantees the wrong treatment."

 

http://www.benzobuddies.org/forum/index.php?topic=220565.0

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Hello again, Data_Guy.  Please don’t go to any extra on my account.  I thought you had the refs easily at hand.  I’ll check out the links you provided.  Thank you so much.  Libertas
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