How to explain Benzo-harm to friends?

[[Ag...]]

Have others found an effective way to describe their benzo-harm condition to others? What has worked well? Can others relate to the problem I have with this?

 

I used to have a broad social circle including close, good friends. But since Benzo-harm I have been increasingly unable to stay in touch and participate in social connection.

At first this made me feel so scared that I would lose my friends because of my inability to respond to their attempts at contact, but eventually I have had to accept there is nothing I can do except wait this out and resurrect what ever's left when I'm better enough.

 

I am still in very infrequent contact with close,  tight friends . . . But here's the thing. I haven't found a way to explain my benzo condition with them in a way that sounds plausible and intact. I get the feeling they start to look at me sideways when I try.

 

On those occasions when I have been 'well' enough to try and talk/meet with a friend, I am trying my best to exhibit some social graces and not be totally consumed by my own ailments.

 

I am also recovering from a frontal lobe brain injury which makes it hard for me to stay on track or be succinct. I can hear  myself 'going on', and 'all over the place' when I try to express myself. I have lost my 'edit' function. Another reason i try and avoid inflicting myself or my attempts at explanation on others.

 

If I get a text or message, especially one that asks me how I am, I get so conflicted about how to reply.

 

I don't know how to represent the part of myself that is strong and surviving through this while at the same time showing the part of me that is currently dehibilitated and so reduced by benzo-harm. I want to be able to communicate the truth of this struggle and suffering, without whinging and moaning in ways that become unbearable and inconsiderate  to others.

 

The doctors don't recognise the source of my ailment; my family and friends don't understand it, and I don't seem to have found a way to explain it.

 

I think something that complicates it in my case is that people assume i have 'disappeared' because i eventually must have 'broken down' after being the victim of a violent crime/home invasion in 2017. In fact, it was the medication I was prescribed in response to injuries from that assault that is a major  source of my current problems. It really frustrates and hurts me that people, especially the doctors,  imagine that all my symptoms are rooted in PTSD from being attacked in 2017, when I know they're not.  It's so annoying that they seem to imagine I'm in denial about what happened. I'm not. They are.

 

When I tell them that serotonin syndrome/akathisia was the worst torment of my life, i can see their disbelief. And they won't give any credence to my 'claim' of benzo harm.

So I am given no medically accurate diagnosis for my current condition apart from what I claim for myself to be true. While others look at me sideways.

 

I am aware of people who have survived cancer who have said that benzo harm has been worse than that.

 

I am so incredibly lucky to have a partner who sees what is in front of his eyes and absolutely accepts the benzo harm.

 

I got in touch with the author of a book who wrote a benzo story and he put me in touch with someone locally who has survived 'withdrawal'. My partner rang her yesterday (I am still struggling with managing social interaction - partly because I sound like I'm coping with conversation better than I actually can). Even though i didn't get to speak to her myself my partner told me about the conversation afterwards. And it was so wonderful for us both to have made contact with someone outside our bubble who really knows 'how I am' - in ways I can't answer to my friends when they ask me 'what r u up to?' OR how r u? It was wonderful for my partner too. Because for the most part we feel so alone with this. It was really special to connect with her and her understanding.

 

I guess for me, i am in that place where i resolve to:

- remain very grateful for my partner, the online/virtual community, for validation

- accept that I haven't yet found a way to explain benzo-harm to the uninitiated, but that I can keep working to find and adopt a simple and clear, plausible-sounding explanation. Maybe something including neurological dysregulation from prescribed medication toxicity, resulting in symptoms (in my current case) that look similar to someone with ME/chronic fatigue.

-accept that I can't educate the medical profession if they are unwilling to open their eyes to the material (eg from BIC) that I have shared with them.

- accept that my friends/family may not be able to understand what I am going through but it doesn't mean they don't care about me. The same way I care about people I know who have recently lost loved ones or are suffering other illnesses and disabilities or hardship. I don't have to know the details to care, and sometimes even though I am not able to put my care in action, i still wish them very well.

 

 

 

[[tr...]]

First of all I am truly sorry for your trauma AND that you're enduring benzo WD. I think your last paragraph sums things up nicely.

 

For friends I just have said that my body got used to a drug and hasnow given me some very bad side effects I need to heal from, and it takes time. I used to want to give them a seminar about all of this. But now I just keep it simple. Too much info overwhelms people sometimes. I just keep it short and finish with, " Just never take a benzo".

 

For myself, I have realized that I need to put my energy into healing and self care, and on good days put energy into my family. Educating the world about benzos is on the back burner for now.

 

Be well!

 

 

[[Ag...]]

Thanks so much for your comment Trina75, I really appreciate your supportive message so much.

Keeping it simple is something I needed reminder of.  Thank you.

I wish you well too.  I went over to your blog and relate so much to your postings.  I wish you as much restorative sleep as possible (I'm in New Zealand, so middle of day/different time zone here) and healing in all ways. 

[[Re...]]

I just tell family and friends I have Benzodiazepine Withdrawal Syndrome and I also e-mail them some info on what it is from Jennifer Leigh’s website .  I realize they still don’t get it completely, but at least they have something to go on besides what I try to explain.  I have also considered letting them watch Lisa Ling’s documentary called “This is Life the Benzo Crisis”. you can find it on youtube.  I’m still home bound because of it so at least I’m not running into people in public trying to explain this .

[[sh...]]

Hi

 

I have struggled with this over the years and sadly have lost friends...mainly because this experience changed me as a person. The few friends I have know that I have aches and pains and react to some foods....keep it simple..Just say that you currently have aches and pains and dizziness..things they will understand and say that with some people withdrawal from any drug can take time to heal. I used to lie a bit sometimes and tell them that the doctor has acknowledged my condition as people and friends respond better to this.

 

Sometimes I used to fake it to make it...my family still don't get it all this time later and my husband has braved it through with me as he witnessed how I changed with withdrawal. I hope this helps

 

Im fortunate that I found a neurologist who acknowledges my condition. I also found that pharmacists have a much better understanding of withdrawal than doctors and spoke to a few who did acknolwedge withdrawal.

 

Hope this helps

 

Shania  xxx

[[Ag...]]

Thanks so much for your response to my post Shania - I only just saw it after all these months as have not been on line much.  I can relate to what you say and thank you for your help.  Best wishes, Sarah

Hi

 

I have struggled with this over the years and sadly have lost friends...mainly because this experience changed me as a person. The few friends I have know that I have aches and pains and react to some foods....keep it simple..Just say that you currently have aches and pains and dizziness..things they will understand and say that with some people withdrawal from any drug can take time to heal. I used to lie a bit sometimes and tell them that the doctor has acknowledged my condition as people and friends respond better to this.

 

Sometimes I used to fake it to make it...my family still don't get it all this time later and my husband has braved it through with me as he witnessed how I changed with withdrawal. I hope this helps

 

Im fortunate that I found a neurologist who acknowledges my condition. I also found that pharmacists have a much better understanding of withdrawal than doctors and spoke to a few who did acknolwedge withdrawal.

 

Hope this helps

 

Shania  xxx

[[Re...]]

I told my best friend that I was going through benzo withdrawal and she didn’t believe me. I had told her about benzo buddies and this website and how it was the only thing that explained all of the weird physical and mental symptoms that I suddenly had  ... she said that I shouldn’t believe things written by strangers on the Internet.  It was really frustrating but I knew that what I was going through was real. Her disbelief made me angry ... I felt that she was not being a supportive friend at all and this type of thing with the last thing I needed on top of all of the suffering I was going through. I told her that I needed some time by myself so that I could focus on my health and my recovery. We didn’t correspond for a while and healing from with drawl became my full-time focus.  Several months later when I was doing a bit better, we got back in touch and now all is well with our friendship.

[[So...]]

I know it's very hard when a doctor won't acknowledge benzo harm. Or any drug harm for that matter. It sucks. I saw a BUNCH that didnt. My husband, family and a few close friends got it. But many others didn't understand the severity of it. Some finally started being more understanding only AFTER my good Neurologist said he straight up knew that benzo withdrawl was a thing, and that I was a victim.

It became easier for me to explain it as a neurological issue.

You are doing well I think with it. It does take some accepting that some friends or family just will not get it, and they will never know the suffering that it is. But like you said, doesn't mean they don't care. They just don't have anything to compare it to in order to have compassion. Some will read and find out. Some won't.

But if you have your closest loved ones that know, then YES be thankful for that, because not all on here have that.

Even my closest friends...I just told them not to ask me how I was anymore! I told them I would let them know if there were improvements and in the meantime, said just text me things like you normally would, like tell me about your day, what's going on in your life, funny things, stuff like that, but don't ask me how my day was, lol. They actually liked it that way, because they felt free to talk to me like normal, but also knew I wasn't normal, so they could throw in things like "man, when you are better, we are gonna do this or that"  So it made me feel like they still cared and thought about me and knew I was suffering....but I didn't have to tell them all the time...cuz it gets real old...for everyone.

Those texts helped me remember who I was and what kind of friend I normally am.

 

Now I am the real me, whose friends text me and ask how I am....I can say...I'm doing really good!

I believe you will too.

 

 

[Guest [Fi...]]

I felt this way about explaining to friends and family...I even sent out a sick note via text from my NP basically stating that I am bravely getting my brain back...if people

Love you, it’s very simple.  They will get on google and educate themselves.  If they don’t, do not waste any energy on anyone...easier said than done I know.

 

I went through a stage where I was completely self conscious.  I was paranoid about judgement, credibility, failure, I was embarrassed...now as I am healing, I am sick, it sucks, but sin sick.  I’ll heal in time, some people handle being sick better than others.  I happen To really struggle with it, but have a super awesome support system on here and with my friend Popsie.  Oh my gosh one day I will write my success story and tell you all about Popsie...he’s going to be 90, he’s my best friend ❤️

[[Ag...]]

I know it's very hard when a doctor won't acknowledge benzo harm. Or any drug harm for that matter. It sucks. I saw a BUNCH that didnt. My husband, family and a few close friends got it. But many others didn't understand the severity of it. Some finally started being more understanding only AFTER my good Neurologist said he straight up knew that benzo withdrawl was a thing, and that I was a victim.

It became easier for me to explain it as a neurological issue.

You are doing well I think with it. It does take some accepting that some friends or family just will not get it, and they will never know the suffering that it is. But like you said, doesn't mean they don't care. They just don't have anything to compare it to in order to have compassion. Some will read and find out. Some won't.

But if you have your closest loved ones that know, then YES be thankful for that, because not all on here have that.

Even my closest friends...I just told them not to ask me how I was anymore! I told them I would let them know if there were improvements and in the meantime, said just text me things like you normally would, like tell me about your day, what's going on in your life, funny things, stuff like that, but don't ask me how my day was, lol. They actually liked it that way, because they felt free to talk to me like normal, but also knew I wasn't normal, so they could throw in things like "man, when you are better, we are gonna do this or that"  So it made me feel like they still cared and thought about me and knew I was suffering....but I didn't have to tell them all the time...cuz it gets real old...for everyone.

Those texts helped me remember who I was and what kind of friend I normally am.

 

Now I am the real me, whose friends text me and ask how I am....I can say...I'm doing really good!

I believe you will too.

 

Thank you for taking the time to respond to my post SouthernBelle, and for your encouragement, experience and understanding.  I really like your idea about getting texts from your friends that didn't require you to reply how you were and how they reminded you who you were and normally are. 

 

It gives me hope to read "now I am the real me".  I am trying to be patient when it is tedious and resilient when it is torturous, and most of all I am hoping my partner will see this through with me and get to be with the 'real me' again.  Thank you again and very best wishes.