Benzo withdrawal is unlike any other illness. It affects every level of existence; our bodies, minds, and our spirits. As hard as it is going through benzo withdrawal, what makes it even harder is that friends and family often don’t understand our illness. Here is what we wish they knew:
- We suffer from an iatrogenic illness, meaning it is doctor induced. We trusted our doctor and took our medication as prescribed. That medication caused a chemical injury to our brain and central nervous system (downregulated GABA receptors). We are angry (hurt, saddened shocked) that our doctors prescribed a harmful medication. We need time to come to terms with our feelings about the recovery we must go through to reclaim our health.
- Most doctors are uneducated about the damage caused, and therefore their advice on how to treat or cope with the damage while we heal can sometimes be dangerous. We don’t have medical support, and frankly, it is demoralizing to talk with medical personnel who tell us that “The drugs can’t do that.” or, “It’s all in your head.” or worse, “You’ve got a disorder and need more drugs.” Please don’t tell us to seek medical help from a doctor who isn’t benzo-wise, or to shame us for not following an uneducated doctor’s advice that we know is harmful.
- Life may change a great deal while we are recovering. We may be unable to work or to take care of our family for quite some time. Please understand that we are not lazy. We are benzo sick. We may need you to help us do the paperwork of paying bills, taxes, etc. We may need help with grocery shopping, food preparation, or taking a shower. We may not be able to drive, walk around the block, or do much physical activity.
- Healing from benzo withdrawal is not linear. We have windows and waves. When we feel better, we are in a window. When we have an increase or a return of symptoms, we are in a wave. Window and waves can come on suddenly. Thus it is hard to make plans because we don’t know how we will feel from one moment to the next. Please understand when we have to suddenly cancel plans.
- We don’t have normal thoughts or feelings in benzo withdrawal. We are often consumed by fear and a doom and gloom view of the world/life. We may also suddenly experience euphoria one moment, only to plummet into despair the next. This is due to the damaged receptors in our brains. We can’t logically think our way out of these states. They are biological, not psychological. We must wait for our brains to recover, which means we need you to be patient with us. Don’t abandon us on our journey back to health. And, it can be a very long journey. Please go the distance with us.
- We may not look sick, but we feel sick. On top of not having normal thoughts or feelings, we may suffer from pain, burning skin, crushing fatigue, weakness, dizziness, tingling, and other physical symptoms. We may need someone to help us cook, clean, grocery shop, run errands, take care of our children, etc.
- Giving unasked for advice is damaging. It puts people on the defensive. The best thing you can do for us is to simply be present. Don’t tell us what you think we should think, feel, or do. Just listen. Deeply. If you want to be helpful, say this: “What do you need and how can I help?” Those words empower us to find our truth and our solutions.
- Know that we want to be well and back to normal far more than you want that for us. We are doing our best as we face a recovery that can take quite a long time. It would be wonderful if you could educate yourself some about what we are going through, but as long as you treat us with care and compassion, that is all that matters. We need you now more than ever, and we are grateful for your love and support, even if we can’t show it or express it at the moment. When our emotions return to normal, we will be more able to communicate our deep thanks to you. Until then, please don’t be offended by our inability to connect with you.
- People experiencing benzo withdrawal can be exceptionally needy. We aren’t in control of our thoughts or feelings, and our bodies are experiencing strange, frightening things. We are frightened that we may never heal. We may ask over and over and over again, “Will I get well?” The answer to this question is “Yes.” Please remind us as many times as we may ask. If we become too draining with our neediness, please take care of yourself and take a break. We understand you may need to recharge your batteries.
- Suicide is a very real danger in benzo withdrawal. Please take us seriously if we say we don’t feel that we can go on. Have a plan of action in place with us so we both know what to do should thoughts of suicide occur.
- We may experience “benzo rage,” a frightening state of anger that feels overwhelming. We’ve momentarily lost control. Protect yourself, of course, should we direct our rage at you. Know that we aren’t ourselves and the rage is not who we are, nor is it really about you. It’s about damage to our brain that is slowly healing.
- People in withdrawal often develop food sensitivities. We have to avoid some things that we used to be able to eat. We aren’t being picky, stubborn, demanding, or seeking attention. We are avoiding certain foods to avoid an increase in benzo withdrawal symptoms. We also may have an increase in symptoms if we take certain supplements or vitamins, prescription or over-the-counter drugs.
- It can take years to be fully recovered from the damage caused by taking a benzodiazepine. In that time, we may have times of feeling mostly normal, only to experience a setback. We can have a flare of symptoms that once again make normal life difficult. At some point windows, waves, and setbacks will stop occurring, but until then, we have to be careful to take very good care of ourselves and limit our stress levels, eat healthily, rest, etc.
- We want you to know that we miss you. We miss ourselves. We miss the life we used to have. We miss the joy, the fun, the love, and the laughter. It will return, but until then, we live in an altered reality that is foreign and frightening. Please love us. Please walk with us all the way to recovery, holding our hands and our hearts. We will love you all the more when we are well, and life will once again be wonderful. Thank you for being there for us.
Jennifer, thank you for a fantastic post. Sadly it is so accurate and I know so because I have experienced much of it. Bless you for all you do for us!
Lovely writing again! I will send this to some of my friends and family members. I have one question for you: what would you do different in benzo wd? Thank you ❤️
Great question. I’ll blog my answer soon.
Thank you! Keep writing… it is a masterpiece to me… so warm and authentic 💕
Are you recovered from your setback?
Yes, for the most part. A few mild sx now and again, but nothing that stops me from doing all I want to do. It was a very challenging setback, but I learned a great deal. For that, I am grateful.
Thank you for your kind words. I appreciate them. I write from my heart. I want everyone to hold and get their lives back, because we all do, in time.
It’s been about a year since I was on 100 mg elavil. I cold-turkeyed down to 50mg., then tapered off. Life has been pretty dark these days. I’m clinging to God for strength. Music helps and so does having distractions such as minor chores and obligations. Nothing major. But being around people can be so helpful – however, there is so much isolation because everyone is too busy doing life. So what happens when you’re alone…….those thoughts which are hard to control. Dear God, get me thru this……You came to this world for such a one like me. Thank you for my healing. (remember to thank Him in advance) V. imp.
I am a writer myself, and this is beautifully written. It is powerful for those of us enduring this as well, as we blame and shame ourselves at times for all the things we cannot do, the memory loss, the multiple mistakes we make because of the benzo brain damage. Though I have learned that self-love and acceptance is the most important part of this journey — when the benzo rage strikes or I lose something important I blame myself — not those who caused this. Thank you, reading this brings me back to compassion — for my suffering self and all those enduring Benzo Withdrawal Hell.
Your article is so accurate. I just sent it to my family. Thank you.
You are welcome. I hope it is helpful.
So true. I sit here in tears as my father and sister just didn’t or wouldn’t understand infact even worse, kept blaming me. I have sent this to them as they have told me when I can admit our relationship issues are my fault we can work it out. Hopefully it starts them understanding what happens for us. I am so pleased to hear you are well again. Can I just ask do you think anything you did lessened the time in took for you to get well again. I was making slow progress over the last 4 months and then came another attack by my father and sister and I feel I am right back at square one. No amount of telling myself not to let it bother me or that I will get through this seems to make it any better. I was getting better and just don’t know how to get back on that track again.
Hi Jennifer I am JUST starting my journey…. I was on Klonopin 1-2 mg as needed for sleep and anxiety for most of the last 11 years. I cold turkeyed inadvertently because I had overtaken my dose during the “perfect storm” of taxing international travel, jet lag, pneumonia and a new job January 2nd, PLUS finding out in January that my very dear nephew Pete had been on Klonopin and was trying to get off it when he died by suicide three years ago…. If I had known three years ago I would have started a taper off them then. There is NO FREAKING WAY i would have kept putting that shit in my body. So anyway, I couldn’t fill my script, and I realized that what I was feeling was withdrawal NOT another anxiety attack… I couldn’t sleep even after my script was filled and I took 2-3 a night. I never overused the med in the first ten years on it. I went back to my doctor sleep-deprived and shaking. He put me on Lunesta to sleep even though I told him I had tried Lunesta years ago. His response “You were only on 1 mg. I’m putting you on three.” Makes sense, right!??! NOT I took the lunesta four or five nights, clenched my jaw and laid there wired for sound all night. Back to dr. Told him I NEED TO TAPER OFF KLONOPIN, htat i have been researching long term effects of Benzos. This time he says, “You can’t go on without sleep.” Prescribes me 30 mg of Temazepam (Restoril) for sleep I think qty for ten nights. AND says, “And then I am going to prescribe .5 ml as needed, UP TO 3x day Klonopin to take the edge off during the day.” I came home, researched Temazepam and found it was another BENZO. I was so angry, I filled neither script, decided to go cold turkey this time intentionally, and by Day 5 I was having manic bouts trying to continue on in my new sales job. Talking too much, too fast, too loud and unable to slow down. Looked down and I’m driving 92 in a 55 mph zone. I am sleeping 1-2 hours of sleep a night and terrified as soon as night falls. I went on leave from my job this past monday (five days ago) and I have two weeks to come back or my job is gone. I’m pretty sure I will not be ready to work again in another ten days. I am somewhere between 14-18 days in. I do not want to taper because everything I read tells me that at this stage, even reinstating at my 2 mg/dose is probably going to be no relief. I am terrified that my husband that has been a saint through the last two weeks HAS NO IDEA this could literally be years long…. We have not said anything to our grown kids. I have been on and off psych meds since a TBI from a car accident 28 years ago. I have been hospitalized twice on suicide watch over the years and have had suicide ideation MUCH more often than that. My 23 yo daughter who I love more than anything told me “Mom, I have had to worry about you my entire life.” She was not trying to be mean, just honest. My heart broke. I need some reassurance and thoughts on how we tell the kids what I am going through and some encouragement.
I am so sorry to hear of your suffering and the worry of your children. Perhaps if you share with them my posts about what we wish our friends and family knew about benzo withdrawal they may understand more. The not so good news is that it may take some time to heal, but the good (great!) news is that you will heal and you will regain your life in new and wonderful ways. One day, your daughter won’t worry about you anymore! Better days really are ahead.
Tell us how you actually hot better. My daughter has been sick for the past 2 years trying to get off benzos. I need REAL help not just encouragement.
Beautiful, best I have read, most people don’t even know what a benzo is!!!
Linda, it is time that heals us, not anything that we do. All we must do is to not get in the way of our healing. That means we rest, avoid stress, we don’t take things that will work on GABA or rev up our CNS, and we practice patience, acceptance, and distraction. Just as a scraped knee will heal on its own without our intervention, so will our brains heal without our intervention. I wish there was a “recipe” for healing from benzos, but there isn’t, just a list of things to avoid, and lots and lots of patience.