Telling friends/family about your taper?

Hi All,

 

I'm in week 3 of tapering down on klonopin for the first time after being prescribed benzos for 3 years. My  symptoms aren't  very predictable - but some days I'm exhausted, some I have debilitating headaches,  some I'm moody/irritable and can't handle being around people... I  keep canceling things w friends  and I want to explain what's going on but don't know how to.  Does anyone  have any go-to links or resources or lines they give to  folks?

 

Thanks in advance!

Personally I just tell it like it is.. feels like I’m owning it and making myself accountable.

But I know that’s not for everyone.

I have learned that trying to explain what is going on in my head with the Benzo use and withdrawal to somebody who has not gone through it themselves is like explaining quantum theory to an ant.  Its doubly hard when the people around you feel that if the benzo helps with your anxiety then why would you stop using it!  So for the most part I keep it to myself and soldier on, however, if you do have an understanding partner or friend that gets it..lean on them as much as possible.

 

Having said that there is nothing wrong with telling everybody that your tapering and to be patient with you over the coming months...some will be with you on the other side and some may not....life will go on regardless.  I read someplace that a high percentage of people who suffer from anxiety are more concerned about others feelings than their own... and are typically considered extremely nice people.  We hold our tongues when others freak out..we try to fix those around us at great cost to ourselves.  So for myself I have had to step back and not worry so much about how others feel and to shed some of the weight I was carrying that got me to this place in life in the first place.

 

In short...nothing wrong with telling everybody what your going through but don't expect them to understand how your feeling.  Connecting with folks on BB is a great place to get support and just take it one day at a time.  Not sure how your tapering but know that it can be a very long process...the slower you go the less it will impact your life.  I am doing a liquid taper off of Klonopin and its working well for me as I have precise control over how much I micro drop on a daily basis.

 

Best of luck and try not to worry about what others think...this is about you! 

I still struggle with this and I’ve not told many people details as I was tapering but now that I’ve completed my taper I feel more comfortable sharing, not sure why. I was thinking about posting this same question. I think you’re looking for specific verbiage. This is what I tell people but I still feel like there are better ways to explain. My main objectives are to make it clear I didn’t abuse a drug, it’s not an addiction (such as an opiate) and these symptoms are not in my head. Which is hard to do if you haven’t experienced this yourself.

 

What I tell people I don’t know well:

“I’m recovering from an injury.” “My CNS was injured.”

 

A bit more info:

“I was injured by/had a bad reaction to a medication I was prescribed. My CNS was injured.”

 

Close friends or family:

All of the above but say “my CNS was injured by a drug I should not have been prescribed. My NS was altered and a physical dependence was the result. Similar to a diabetic needing insulin I could have a sizers or permanent symptoms if I abruptly cease the medication. I had to slowly reduce the medication in order to remain functional and not have permanent/protracted symptoms.” I’ve also heard this compared to a brain injury due to a car crash.

 

I think there’s an even better way to explain but not sure what it is. Hope this helps.

 

Hi Academicat,

 

The best article I've seen is:

 

https://w-bad.org/family-and-friends-this-ones-for-you/

 

The article is fairly long but divided well. There is another shorter but excellent article that I have back in my files. I will look for that one and be back with that link.

Here is the shorter article. It's really good.

 

https://benzowithdrawalhelp.com/recovery/what-we-wish-family-and-friends-knew-about-benzo-withdrawal/

 

I hope those help. It can be really hard to explain this to others.

Hi Academicat,

 

The best article I've seen is:

 

https://w-bad.org/family-and-friends-this-ones-for-you/

 

The article is fairly long but divided well. There is another shorter but excellent article that I have back in my files. I will look for that one and be back with that link.

 

This is a really great article, thank you for sharing.

I'm glad you liked it mountain. I think seltzerer first shared it.

Hi All,

 

I'm in week 3 of tapering down on klonopin for the first time after being prescribed benzos for 3 years. My  symptoms aren't  very predictable - but some days I'm exhausted, some I have debilitating headaches,  some I'm moody/irritable and can't handle being around people... I  keep canceling things w friends  and I want to explain what's going on but don't know how to.  Does anyone  have any go-to links or resources or lines they give to  folks?

 

Thanks in advance!

 

Here is a post I read today, hopefully it will help 

 

Hi SophieLovesHim ,

 

What a beautiful nickname you've chosen! I really love it!

 

I here attach something I just finished to read, hope you like it:

...And if you ARE a family member, please realize that those of us in recovery are no more in control of how we feel or what we experience than people who have undergone brain trauma in a car accident. Please be patient with us, because our brains are healing and we are in the process of reconstruction - and our function is temporarily enabled, then disabled, then enabled, then disabled again.  And that is totally normal and expected.  We can no more help that than a person can "want" to wake up out of a coma. It happens when the brain is able - and not out of sheer will.  But it does happen. So please stand by us and say loving things and reassure us every day. Notice our improvements and tell us what they are.  Encourage us when we feel good.  And when we don't, just hold us and hug us and tell us it will be okay.  Anything you would say or do for a family member that had had a car accident and a brain injury - please do that for us.  And be patient... we are getting there.

 

This extract came from one of the best benzo-related articles I happened to read recently. I would like to share it with you. I warmly hope it can provide answers to some of the problems you are encountering.

http://www.benzobuddies.org/forum/index.php?topic=66397.0

It will take perhaps some time but I'm sure your husband will fully recover

Of course it's nobody's business about us tapering, but I have chosen to tell TONS of people about it and have received great support. My boss knows, my coworkers know, my family knows, all my friends know. It has given me great support and they are ALL educate about Benzo danger now, maybe I've saved else someone from this horror. I refuse to be ashamed.

I shared this article with my close support network and they said it helped them understand a bit:

 

https://benzowithdrawalhelp.com/recovery/what-we-wish-family-and-friends-knew-about-benzo-withdrawal/

 

 

Personally if someone asks I'll tell them how I feel. I'm not being "on" for anyone during this crap. Also people shouldn't ask if they dont want to hear it. Having said all that I still semi regret saying anything because no one gets it anyways and saying anything hasn't helped me at all.

Of course it's nobody's business about us tapering, but I have chosen to tell TONS of people about it and have received great support. My boss knows, my coworkers know, my family knows, all my friends know. It has given me great support and they are ALL educate about Benzo danger now, maybe I've saved else someone from this horror. I refuse to be ashamed.

 

That’s great Fighter! I think In my case I’m more concerned about my kids and their reputations more than my own. I don’t care as much what people think of me but don’t in any way want my kids to miss out in anything because a parent thinks I’m an addict or something ridiculous. I do find that now that I’ve stepped off I feel more inclined to tell some people about it. Im not out of the woods yet but I think part of the reason is it’s easier to prove the damage these drugs do if I’m experiencing symptoms when I’m not taking the drug anymore. It’s sad I have to prove anything (or the perception that I have to prove anything) but that’s the reality of this injury/illness.

 

Of course it's nobody's business about us tapering, but I have chosen to tell TONS of people about it and have received great support. My boss knows, my coworkers know, my family knows, all my friends know. It has given me great support and they are ALL educate about Benzo danger now, maybe I've saved else someone from this horror. I refuse to be ashamed.

 

That’s great Fighter! I think In my case I’m more concerned about my kids and their reputations more than my own. I don’t care as much what people think of me but don’t in any way want my kids to miss out in anything because a parent thinks I’m an addict or something ridiculous. I do find that now that I’ve stepped off I feel more inclined to tell some people about it. Im not out of the woods yet but I think part of the reason is it’s easier to prove the damage these drugs do if I’m experiencing symptoms when I’m not taking the drug anymore. It’s sad I have to prove anything (or the perception that I have to prove anything) but that’s the reality of this injury/illness.

 

I agree about the kids thing. I'm more cautious what I've said to the parents of my kids' friends. My story is a little different because I got on these stupid meds because I've had a major GI issue (LPR reflux disease to where I can hardly breathe after meals ) grossly misdiagnosed for 9 months and have now lost 54lbs. It's highly noticeable something is wrong with me. I always get asked how I'm doing, and I just tell them the truth that I'm still looking for answers with second opinions but I was grossly misdiagnosed and that the doctors made several mistakes in putting me on the wrong meds. I was dependent on these stupid meds in only 2 weeks, but it took me almost 2 months to realize and then transfer to longer life Benzo to taper. It's been such a mess.

Sorry I disappeared for a bit from this site... but just came back and found all of these warm, generous and helpful replies -- thanks so much!! Reading through these articles now!

Hi All,

 

I'm in week 3 of tapering down on klonopin for the first time after being prescribed benzos for 3 years. My  symptoms aren't  very predictable - but some days I'm exhausted, some I have debilitating headaches,  some I'm moody/irritable and can't handle being around people... I  keep canceling things w friends  and I want to explain what's going on but don't know how to.  Does anyone  have any go-to links or resources or lines they give to  folks?

 

Thanks in advance!

 

I agree with @JJ Natural

I tell everyone like it is. Some friends have looked it up but for the majority, most people don't care. My own family is tired of me saying "no" to things but they are too shitty to look up what I'm going through, Zero empathy.

 

Just you worry about You and get through your taper. BB are here for you.

See they talk about what to say !

I’ve also heard this compared to a brain injury due to a car crash.

 

I think there’s an even better way to explain but not sure what it is. Hope this helps.

 

Anything you would say or do for a family member that had had a car accident and a brain injury - please do that for us.  And be patient... we are getting there.

 

i actually was put on benzos BECAUSE of a brain injury from a car accident, i can confirm a massive amount of the symptoms are the same if not worse sometimes than what i had initially after the accident. it is extremely similar but strangely enough, people gave me much more attention in the hospital after my car wreck and TBI than they ever did during my taper. even presently i'm still tapering and it's getting harder than my brain injury in some areas- and people are no where to be seen.

 

it's a shame but sometimes you have to explain the situation differently to get people to understand the severity of it, like comparing it to a brain injury from an accident.

I also have a TBI (though mine is unrelated to my benzos that were prescribed for panic disorder) and agree that the symptoms are very similar! When I see my doctor and they ask about TBI symptoms I can no longer tell them bc I can't differentiate between benzo wd and TBI symptoms (except the quality of the headache is distinctly different, just different crappy ).

Everyone knows I’m pretty outspoken about it on Facebook. I figure if one person doesn’t take this poison because of something I say or post all the better

Oh my, yes, I'm canceling things with friends FAR more often than I like.  But, also trying to be OK with that.  I have a handful of close friends/family with whom I share 'everything' about my withdrawal experience.  But I've experienced avoidance, strange looks, feeling misunderstood, etc, by those not as close to me, with whom I open my mouth and say it like I'm feeling it! 

It's an interesting dance, one that you have to feel out on your own, I believe.  And find people you can trust, EVEN if they never went through this, people who will take what you say seriously, and care about you for who you are - those are precious people to keep around! 

 

I enjoy this woman's youtube videos and here's one you could possibly share with your close friends and family, instead of having to talk about it yourself.  Maybe it doesn't all apply to you, but type out what does.  Just an idea - if it's helpful for you!

Here's the link -

 

 

I was open with some close family members and maybe only 1 or 2 close friends. In Retrospect I wish I had been more open because I think some people are perhaps more calm passionate than we think and I’ve ended up creating all these stories about other medical ailments as my work industry definitely would not have been understanding. IDK, this whole thing is such a puzzle but I feel like for me the lies and stories I’ve made up have made my anxiety about all of it so much worse.