If you discovered a new color, how could you explain it to someone? There would be no reference point; it’s not blue, orange, etc. It’s the same with benzo withdrawal. There is no reference point. How can we explain the symptoms we experience so that someone understands? It’s a challenge. Here are some suggestions.

First, it’s helpful to explain that a benzodiazepine, taken as prescribed, can damage some people but not others. Sharing that bit of information upfront can nip in the bud any arguments about the dangers. (But Aunt Mildred has taken Valium for twenty years, and she’s okay!). You may want to let people know that the medical community is primarily uneducated about the dangers of benzos. That helps to nip in the bud the argument that “doctors wouldn’t prescribe them if they were dangerous.”

You may want to explain that anyone who hasn’t experienced benzo withdrawal will have difficulty understanding it. You can share the example of discovering a new color; no reference point. Explain that some symptoms are so far beyond everyday experience that you may not be able to describe what you feel in your body.

You can share that benzos can cause a chemical brain injury, downregulating GABA receptors. The damage takes time to repair, and there is no pill, therapy, or treatment that can “cure” withdrawal or quicken the healing time. That’s why it’s not a good idea to take more pills or to undergo treatment that the benzo community knows isn’t helpful. The best we have are the four cornerstones of well-being: eat right, move enough, stress less, and love well.

It can be exhausting to have to explain your benzodiazepine injury to people, especially to those people who don’t grasp the severity of it. I used to cringe when I’d share the scary sensations in my brain, and someone would reply, “I get a headache now and then.” Or, I’d share about my severe insomnia and the fear I’d never sleep normally again, and the reply would be, “It takes me an hour to fall asleep sometimes.” Not the same. Not even close.

After being in withdrawal for some time, I told people that I had a brain injury and left it at that. I had become too tired of explaining how frightening and debilitating a benzodiazepine injury can be. It became easier to say, “Imagine that you’re tripping on acid, had a stroke, been hit by a bus, and you’re in front of a firing squad. That’s what benzo withdrawal is like; it’s intense pain, fear, and terror. It’s being unable to make sense of yourself or reality. It’s being cognitively and memory impaired. And feeling that you’ll never return to normal. It’s a hellish living nightmare.”

When people gave me unasked for advice on how to cope with benzo withdrawal, I used the when-you-I-feel statement to politely let them know that their advice wasn’t helpful. (Unasked for advice is a judgment that we aren’t doing things correctly. Being judged shifts people’s nervous system into the protect state of fight, flight, or freeze.) The responses of “Think happy thoughts” or “Take your mind off things, and you’ll feel better” made me want to punch someone. (Yes, rage is a benzo symptom.)

When people don’t understand what we go through in benzo withdrawal we can feel alone and lonely, abandoned. When we are the most vulnerable and need the most help, to feel so alone is torture. But put your focus and energy on healing, not on getting people to know what you are going through. Put your energy into asking for the help you need. Give clear directions for what someone could do for you, instead of only saying, “I need help.”  People can help you even if they don’t understand what you are going through.

It can be overwhelming to cope with the frustration from the lack of understanding and the isolation and loneliness of benzo withdrawal. It’s good to create a community of people who try to understand and support you. It’s also helpful to join a community of others who have been through or are in benzo withdrawal. That’s why I created Mornings With Jenn, a group coaching/support group. We’ve moved to Discord so that the community has access to positive activities and resources, as well as information about benzo withdrawal. Besides the group coaching three mornings a week, there are streaming events: movies, audiobooks, educational series, meditation, yoga, guest speakers, and more. If you want ongoing, positive, solution-focused support, please consider joining Mornings With Jenn. We understand benzo withdrawal. We understand and love you.