How do you deal with people who absolutely don't know what you're going through?

[[Ca...]]

Hi buddies, I think most of you know it! You suffer and suffer and feel like crap, again and again... Windows and waves and even worse waves.... you suffer and somtimes all you can do is laying on your sofa for days and weeks... and that for a very long time! To accept that is the hardest lesson of my life! But what really drives me crazy is when I realize how little people around me know about what I am going through and how long that might take! They think I make this all up in my mind! Guys I am just 7 weeks off! It's early days! And that's hard to accept! But I get mad and my symptoms get worse if I get pissed by the people around me if they ask me how I feel (g :olad they ask at all!) they answer "Are you really really sure It's still withdrawal?!? Oh my ******

 

How do you deal with that?

What do you say to people?

Did you manage to make them understand things and what you're going through? And if How did you do that?!

 

My current symptoms: fatigue (the worst, sometimes just lay on my sofa almost all day long), intermittend anxiety and panic, blurry vision, Derealisation, weak muscles, nausea,  jelly legs, distorted perception, weird body sensations, muscle jerks, flushes, Benzo Flue, being very tense, Hyperacusis, Tinnitus, concentration problems, just feeling very sick... it comes and goes in windows and waves... at the moment I almost feel thrown back to the early acute -the first two weeks (almost as bad)

[[Gr...]]

Language is important!!

 

Now first off... Nearly cried when I read your list of symptoms. It's for whatever reason hard to find others who share the same symptoms these days or even a fraction of your symptoms. These are just labels we use, however the experience of these symptoms are disabling and that's being generous at best. They can really making you feel like you're on the edge of something horrible happen.

 

If I posted my symptom list which I document them all in my note pad, A normal person would of committed me a long time ago.

 

I normally stick to myself which is hard because either I'm at work (If I'm able to work, in part owner of a automobile garage so I can come and go as I need... Only saving grace I have right now). But it's even harder because I have a sick dad, ontop of being in bed most of the day.

 

Its tough, and I relate to you. Whenever I go to the hospital I get hit with so many emotions... I'm angry, frustrated when I see nurses and doctors because I know they won't find anything, specialist won't find anything yet the crap we have to experience is living hell.

 

Remember when I said "Language is important"? Well that's a reminder to make sure you're phrasing this properly. When I explain what I'm dealing with, I'll say "Listen, I'm dealing with medication injury" followed by "No, I didn't abuse them" because people always jump to "Oh, a medication injury? Did you do it to yourself?. I go with medication injury for two reasons

 

1) The medical community will never accept BIND (Benzo induced Neurological dysfunction) because it can't be measure therefore it doesn't exist and drug reps will never allow this discovery. Bug Pharma will never allow this discovery... It's a hidden epidemic 😔BIND is more so a club exclusive... If you know, you know type of phrase only accepted in benzo supporting communities.

 

2) If the medical community won't accept it, outsiders won't. It's messed up because iatrogenic injuries are the 3rd leading cause of death in North America so you'd think they'd take this serious. You can also say "Itrogenic injury" I'd you wanna sound intelligent. Introgenic simply meaning a injury caused by medical personal or medication.

 

And after I explain that I'm dealing with medication injury on the Nervous system, I'll normally break down in 5 catagories which this crap is so hard to anyone willing to listen which you should be able to tell within the first 10 seconds after telling someone that this is a medication injury.

 

You can word the description however you want, but I suggest the points remain the same... If you feel you can add to them or re-word them differently to better serve you, please by all means whatever helps you, do it.

 

1) Symptoms

2) Duration of recovery

3) Lack of medical awareness

4) hopelessness

5) loss (Not the big S word everyone is afraid of)

 

1) Symptoms: I normally start off comparing to opiates as they're just as widely prescribed and they also fit within the schedule table when it comes to meds, it's just easier to wrap folks head around. Opiates for example when coming off, you know what to expect... Flu like symptoms, Temperatures issues like hot and cold, Nasty smelly sweats, Headaches, Cognitive issues mild, craving, muscle and joint aches... That mostly covers everything, when it comes to benzos... There are 90+ recognized by Heather Ashton, some of us have much more. It's just a different ball park when you're facing 4-7 symptoms at the same time.

 

2) Duration of recovery: The most accepted duration is up to 18 months, with 5-10% developing protracted withdrawal which can last years more. Again its just a different ball park when you're mind is constantly convincing "Hey, you have this symptom? Not good... You must have this or that". Ontop of the constant "What's wrong with me?" thoughts. It's scary.

 

3) Lack of medical awareness, when you have cancer or opiate withdrawal... People understand, We are 100% alone, worse many of us have to lie about what we're experiencing because either we need a prescription to taper off or we don't wanna be thrown in the mental ward. Or we simply can't describe what we're feeling it's crazy some of these symptoms like the body sensations aren't just one thing, you can have up to 7 symptoms at once with each of them having verants to them its wild. You're arm can feel numb but it's not, you can pinch yourself and feel it but feel like it's disconnected from your body at the same time... What the heck is that all about?

 

4) Hopelessness: Ask anyone with chronic pain, yes the pain is one element... But it's the duration that ruins you, if someone is suffering for months to years that's going to really mess with you. You're already so dang lonely, there's no one to talk to outside of the group and even when you're in the groups you don't feel like people really understand, everyone is dealing with their own hell that they simply can't relate sometimes or they try to 1 up you with their symptoms it's so defeating... Then there's the symptoms EVERY DANG DAY. You place your head on your pillow every night knowing exactly what tomorrow will bring.

 

5) Loss: Not the S word, but like you lose yourself, you're character, you're mind, you're hope, Career/Job, Fiancial stability, Friends, loved ones, you question everything... There's just so much you lose out in until you recover of course.

 

That's generally how I explain some things... If they're willing to listen, if not I'll just say "Leave me alone I'm dealing with a medication injury".

 

And I do my best to detract myself. Video games, books, movies, working in client cars and convincing myself that this crap eventually will come to a end.

 

You hang in there dang it, This will end for you. This isn't for nothing. Recovery is in your name. 🙏😉👍

[[Ca...]]

Thank you so much for this wonderful reply! You are perfectly right!!! THANK YOU! This really made my day! That was what I needed to hear! Thanx so much again for your great effort writing all of this down for me and every buddie who will read! And thanx for your encouragement! This is really one of the very best comments I have ever read on Benzo Buddies!!! And thanx for giving all these expressions on how how to say this! I suffer from Autism and even outside of Benzo withdrawal I've always had huge Problems to express myself though I am highly verbal!

[[Ho...]]

I totally agree with Greyzone and it's good advice. People just don't want us to be sick, and can't believe we can be sick for as long as we are. They can't accept it because if it can happen to us, it can happen to them. So they block it out.

 

So many people have offered me advice and insisted I try this or that. I used to go ahead just to make them happy. I've injected things, tried many diets, supplements and tricks but of course nothing made any difference. This upsets my friends and family to no end!

 

I watched a YouTube video by the psychiatrist Josef Witt-During. He recommended using the term 'Benzodiazepine brain injury' with doctors, so I've used it with friends, too. I told them I have a brain injury, and it takes a long, long time for the brain to heal. No diet or workout or supplement or additional medicine can make it heal quickly. They seem to accept it better than any other explanation.

 

They still recommend I talk to their favorite doctors who 'think out of the box'. I don't get invited out much anymore but that's okay, because being with people in an intimate setting is something I find highly taxing, to say the least! I can, however, have company and do, regularly. I have larger groups of people (8-18) so if I have to bug out I can without being noticed. I like to be around people when nothing is being asked of me other than 'is the coffee ready?' or 'just a small slice please.'  And it's something I can do for others.

 

I'm hanging in there with you! Nine months out from jumping and improving slowly but surely. You will too!

[[Ta...]]

Love Greyzone's answer and hope it helps. I have given all kinds of answers over the years and I also found that saying I have a brain injury from medication is the most conclusively accepted. I say that it has given me neurological issues but I am slowly getting better. While I was in the first years, the worst of it, I didn't have many people around so I didn't have to fight for acceptance from them, thankfully. The family that I spoke to on the phone felt sad for me but never truly understood. Sometimes, it is easier to be more isolated so you don't have to fight people's ignorance, fear or helplessness. Most people don't do well with dealing with sickness let alone other people's.

 

[[Co...]]

Love Greyzone's answer and hope it helps. I have given all kinds of answers over the years and I also found that saying I have a brain injury from medication is the most conclusively accepted. I say that it has given me neurological issues but I am slowly getting better. While I was in the first years, the worst of it, I didn't have many people around so I didn't have to fight for acceptance from them, thankfully. The family that I spoke to on the phone felt sad for me but never truly understood. Sometimes, it is easier to be more isolated so you don't have to fight people's ignorance, fear or helplessness. Most people don't do well with dealing with sickness let alone other people's.

 

That's true. I regret being so open about how I felt and living with my parents when sick from cortisone. It would have been a lot better had I lived alone. Then this wouldn't have happened and I wouldn't have made others so nervous and found a way.

[[Bi...]]

This is why I've told very few people I know

 

The ones Ive told I show them a link to Christines story with the story and videos of this very brave lady's intense suffering after just TWO months on benzos. 21 months she suffered until she took her life. Both people Ive shown this to have a very strong understanding of what I might be going through. It's quite upsetting so if you find it just keep that in mind.

[[Ta...]]

This is why I've told very few people I know

 

The ones Ive told I show them a link to Christines story with the story and videos of this very brave lady's intense suffering after just TWO months on benzos. 21 months she suffered until she took her life. Both people Ive shown this to have a very strong understanding of what I might be going through. It's quite upsetting so if you find it just keep that in mind.

 

Birdypie,

I am not familiar with Christine's story but am curious. I am almost 6 years off Benzo so I can handle it. Do you have a link or the name where I can find it on YouTube?

[[Co...]]

Oh please no, just type it in youtube. It is there. It scares me immensely. She was a true warrior. It is amazing how long she held on. I don't think I would have been able to. So many suffering and worse for so many people all over nothing. So much betrayal by so many doctors. Hippocratic oath, apparently not. Pfft. I used to be smart. I took meds max one day and then decided I was better off. I don't understand what happened to me summer 2022.

[[Re...]]

The isolation is s**tty icing on a crap cake.

 

It has taken months and the additional suffering of being misunderstood and gaslighted, but finally, people have come around. Not everyone, as I lost friends who presumed I had a "mental breakdown." They were not real friends, to begin with, so screw them. I have made some new ones along the way and reconnected with others I wasn't really close with who have been more supportive than long-term friends! And the kindness of some strangers as well.

 

I had to educate people in stages. First, with Dr. Jennifer Leigh's video for friends and family members, then with a lot of other content to open people's eyes to the fact that this could happen to anyone. Mad in America articles, NYT articles, and YouTube videos like those from Dr. Doerring, Angela Peacock, and Melissa Boutilier. Sharing Reddit and BenzoBuddies stories. I can post a thread with everything I showed people to get more support if that helps anyone. Happy to compile a list of all links.

 

Having to explain Akathisia has been interesting. My PCP, who was not my original benzo provider, has stopped prescribing benzos and is thinking twice about prescribing other medications after seeing what I have gone through. He took the time to read all the info I sent about Akathisia, including the MISSD course, which I highly recommend: https://missd.co/

 

I sent the same to my neurologist, who keeps trying to send me to movement specialists who won't have any more info than I already know. We shall see what he says. Movement specialists are a waste of time. All they know is Ativan, Propranolol, and Coegentin.

 

I have now started getting notes from benzo-wise providers of support on my behalf. I had a genetic analysis of adverse drug reactions done by a forensic DNA specialist that is 22 pages that analyzes this injury, and I am getting a forensic psychiatrist evaluation to be used to challenge the medical records. If I go down, I will not go down without a fight! I am showing this as proof to those who doubt me.

 

So, the point is:

Keep self-advocating.

Fight to be heard.

Arm yourself with reputable information.

Arm yourself with facts. Show proof.

Don't be a doormat.

[[Ti...]]

Rebecca, How do you find a forensic DNA specialist to perform that study, and is it specific to the benzo injury or all of what you’ve been prescribed?

[[Re...]]

Rebecca, How do you find a forensic DNA specialist to perform that study, and is it specific to the benzo injury or all of what you’ve been prescribed?

 

Both. I’ll send you details.

[[Gr...]]

I just wanna take this time and apologize, I was reading back what I wrote and oh my goodness... Who wrote some of those sentences? A child? When did my child brain take over? I'm so sorry you all had to come across sentences and think "You're missing a word" or "That's not how you say that" or "I know what you were saying but dang, someone needs school".

 

I apologize everyone I have these periods where I'm just on autopilot trying to get through my thought as fast as possible and onto the other one while typing which I need to work on constructing my sentences better, completely thoughts, grammar and run on sentences are my worst enemy.

 

I just wanted to pop back on and say you all did amazing jobs at explaining this heart breaking defeating process at times. Much love to every single one of you in this fight. We will make it through and this will be a dark chapter in our books that we get to look back on and think "Dang... I got through that when I didn't know me well enough to see me succeed, but now that I know me better then most will ever learn about themselves,im ready to take this world by storm"

 

Thanks for helping eachother everyone you're the all the real hero's here and I can't thank you enough.

[[Nu...]]

Some of the big keywords that I use are: "adverse drug reaction", "taken as directed by my physician", and "low-dose". Using these, I hope others see some key points.. it's a reaction caused by the drug, I only took it according to how my physician directed, and that I wasn't sitting at home taking millions of pills.

 

All the suggestions here are great. And Greyzone -- absolutely no worries. I have this huge brain fog that just won't go away and definitely impacts me on a cognitive and expressive level. You're not alone.

 

To the OP... hope all of these help.

[[Ca...]]

Yes buddies all this helps a lot!!!! Thank you so much y'all! Thank you all for your wonderful replys! Just a couple of hours ago I spoke to my mom and told her it's BIND and told it's a temporary brain injury caused by benzodiazepines! I think she understood and believed me, I hope at least! Thanks to you I had some expressions what to say! This isn't easy for me as an autistic especially in times of benzo withdrawal!

 

Rebecca, it would be so cool if you'd start a new thread on all of your ressources if you can really  do that besides dealing with your many conditions...I think it would help a lot of buddies! Thanx for the plenty Information posted y'all!

 

Oh I know this video from "Christine" I have been like that for 9 months while in Lyrica Withdrawal or while my failed Klonopin reinstatement... I showed it to my mom! She couldn't even look at it! I believe Christine wouldn't have been too far from final healing when she committed suicide concerning the timeline she was... so tragic and sad!

 

Greyzone don't worry! I wrote you before that I thank you so much for this wonderful reply! That really made my day! And thank you so much all the others! It was nice and felt so good to get so many replys here on this thread! It helped me a lot! Now I don't have to fear anymore what to say!

[[Re...]]

I am going to post this here. If you want to suggest a thread title for this information or add to it, I can make a new thread. This is some of the information I have used to send to people to help them understand what I am going through. I have had family members speak with Dr. Jen and Angela as well and I have utilized benzo coaches help with medical professionals.

 

Psychiatric Drug Withdrawal:

 

Benzodiazepine Information Coalition: https://www.benzoinfo.com/

Inner Compass Initiative: https://www.theinnercompass.org/

 

Dr. Jen Leigh “What What family and friends need to know about benzo withdrawal”:

 

Angela Peacock’s You Tube: https://www.youtube.com/@AngiePeacockMSW

 

Dr. Josef Witt-Doerring’s You Tube: https://www.youtube.com/@witt-doerringpsychiatry

 

Melissa Boutilier's You Tube: https://www.youtube.com/@daisygirlsk

 

The Challenge of Going off of Psychiatric Drugs:

https://www.newyorker.com/magazine/2019/04/08/the-challenge-of-going-off-psychiatric-drugs

 

Medicating Normal documentary

 

This Is Life with Lisa Ling "The Benzo Crisis" episode

 

Akathisia:

Free online, continuing education course on akathisia: https://missd.co/

 

Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin (MISSD). For more resources, please see https://missd.co/ and https://www.youtube.com/c/MISSDFoundation

 

Akathisia Alliance for Education and Research: https://akathisiaalliance.org/

 

Jill Nickens’s story:

https://www.madinamerica.com/2021/02/jill-nickens-akathisia-alliance-education-research/

 

Lisa Loomer’s story:

https://www.madinamerica.com/2021/06/boy-interrupted-a-story-of-akathisia/

 

 

[[Nu...]]

Christine's story was the breaking point where I finally knew what was going on. I cried. Her story is heartbreaking. No one should have to endure that... all because physicians don't care to play it safe and go slow if they insist on prescribing these meds.

[[Up...]]

I never told anyone what I was going through I faked my life when I had too.  I spent the first year locked in my house I did not know what hit me, alone laying on the floor and pacing.  Only going out if I had to!  I am very glad I did not traumatize my children, family and friends with this.  They would not have comprehended this and did not deserve my pain and after a very long time I started healing, faking it got easier and life went on.  I did what I had to do to survive.  Christine’s story could have been mine but I made it some how!  I hate that it is plastered everywhere.  I feel bad for her family.  May She Rest in Peace.

[[Ho...]]

I never told anyone what I was going through I faked my life when I had too.  I spent the first year locked in my house alone laying on the floor and pacing,  only going out if I had to!  I am very glad I did not traumatize my children and family with this.  They would not have understood and did not deserve my pain and after a very long time I started healing, faking it got easier and life went on.  I did what I had to do to survive.  Christine’s story could have been mine but I made it some how!  I hate that it is plastered everywhere.  I feel bad for her family.  May she Rest in Peace.

 

Reading this makes me realize I'm doing that, too. In the beginning, when I was 'in acute' I had no idea what was happening to me and kind of imploded. I had a sister I was very close to come and be with my husband and I because I didn't want him alone in it, and I wasn't sure I was going to make it. I did try to explain to friends but they really couldn't fathom it and rather than lose them, I just swallowed it and went on with my life, which did get smaller. I still just fake it. No one but my husband knows how hard this is, and I don't think he fully knows. He keeps telling the doctors I'm handling it very well, so I just leave it at that. My kids really don't know, or my grandkids. I didn't want to traumatize them either. My job is to help them, take care of them and set the best example I can for them. I'm nine months out and struggling. But at least my family is not worried about me.

[[Nu...]]

I never told anyone what I was going through I faked my life when I had too.  I spent the first year locked in my house I did not know what hit me, alone laying on the floor and pacing.  Only going out if I had to!  I am very glad I did not traumatize my children, family and friends with this.  They would not have comprehended this and did not deserve my pain and after a very long time I started healing, faking it got easier and life went on.  I did what I had to do to survive.  Christine’s story could have been mine but I made it some how!  I hate that it is plastered everywhere.  I feel bad for her family.  May She Rest in Peace.

 

I wasn't involved but I got the impression that her family wanted this to be known as a part of awareness. I doubt BIC would leave that posted against the family's wishes...

[[Co...]]

I assume the same. It was to help raise awareness. Poor everyone. What a mess. So many lives affected all for such banal things.

 

That's very strong of you. I wish I had done so with cortisone and been able to keep even more to myself and not use my parents as confidants. I wouldn't have been in this extra mess. I was very optimistic in therapy but that my dad didn't notice enough and the therapist was very bad.

[[Ca...]]

I am going to post this here. If you want to suggest a thread title for this information or add to it, I can make a new thread. This is some of the information I have used to send to people to help them understand what I am going through. I have had family members speak with Dr. Jen and Angela as well and I have utilized benzo coaches help with medical professionals.

 

Psychiatric Drug Withdrawal:

 

Benzodiazepine Information Coalition: https://www.benzoinfo.com/

Inner Compass Initiative: https://www.theinnercompass.org/

 

Dr. Jen Leigh “What What family and friends need to know about benzo withdrawal”:

 

Angela Peacock’s You Tube: https://www.youtube.com/@AngiePeacockMSW

 

Dr. Josef Witt-Doerring’s You Tube: https://www.youtube.com/@witt-doerringpsychiatry

 

Melissa Boutilier's You Tube: https://www.youtube.com/@daisygirlsk

 

The Challenge of Going off of Psychiatric Drugs:

https://www.newyorker.com/magazine/2019/04/08/the-challenge-of-going-off-psychiatric-drugs

 

Medicating Normal documentary

 

This Is Life with Lisa Ling "The Benzo Crisis" episode

 

Akathisia:

Free online, continuing education course on akathisia: https://missd.co/

 

Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin (MISSD). For more resources, please see https://missd.co/ and https://www.youtube.com/c/MISSDFoundation

 

Akathisia Alliance for Education and Research: https://akathisiaalliance.org/

 

Jill Nickens’s story:

https://www.madinamerica.com/2021/02/jill-nickens-akathisia-alliance-education-research/

 

Lisa Loomer’s story:

https://www.madinamerica.com/2021/06/boy-interrupted-a-story-of-akathisia/

 

THANK YOU SO MUCH! Rebecca for posting this! You are awesome! This helped me a lot and it will help a lot of other buddies, too!!!!