Chances are, most of our friends and family members have never experienced benzo withdrawal. They have a hard time understanding what we experience. They can’t appreciate how much effort it takes to get through a day or to hold onto the hope that we will heal. This letter to our family and friends contains what we wish they understood, especially now, during this global pandemic.

Dear Family and Friends,
I took a benzodiazepine because my doctor told me it would help me. I trusted my doctor and took my medication as prescribed. Now, I have frightening and sometimes debilitating symptoms due to the brain and nervous system damage the medication caused. These symptoms are known as “benzo withdrawal,” and they can happen when taking the drug, tapering off the drug, or even many months or years after stopping the medication. Fortunately, the brain and nervous system damage will repair itself in time. But until then, I have to experience the symptoms, as there are no cures or shortcuts to healing other than time.

Benzodiazepines cause GABA receptors in the brain and body to down-regulate. Without enough functioning GABA receptors, our brain and nervous system are like runaway trains—there are no brakes to control or to slow anything down. We live in a hyper-excited state that causes a myriad of frightening and often unbearable symptoms: bone, nerve, joint, and muscle pain. Burning sensations in our bodies and brain. We have vision and balance problems. Ringing in the ears, shaky legs, intense insomnia, debilitating fatigue, and weakness, swallowing and digestive issues, blood pressure spikes or dips, and rapid weight loss are common. Cognitive issues can be severe: we are unable to do even the simplest of tasks. Our short-term memory is profoundly impaired, and we may forget something we did just a few hours ago. Our thoughts are scrambled and scary—intrusive and looping, torturing us to what feels like the brink of sanity. Guilt and shame swallow us whole for no reason. Our emotions are labile: we can be irritated, agitated, enraged, hopeless, depressed, or manic, all within a short period. Panic, fear, anxiety, and terror grip us out of the blue, as do racing or skipped heartbeats. Akathesia, an overwhelming sensation of “inner” restlessness that makes us want to be in constant motion, can also occur. We may even develop Postural Orthostatic Tachycardia Syndrome, and be unable to sit or stand. Parkinsons-like or dystonic movements can overtake our bodies. Many of us are unable to carry on the daily necessities of self-care as showering and brushing our teeth are too painful or taxing. We lose our ability to earn a living and our ability to maintain relationships. Benzo withdrawal is genuinely one of the most frightening health issues a person can experience as it affects all aspects of what it means to a human being. We feel we don’t know who we are anymore, and our loved ones feel like strangers. Even our homes can feel void of anything familiar and be a place of discomfort for us. We may have acute depersonalization or realization, both of which can be terrifying. Suicide ideation is common, and suicides sadly, do occur.

Family and friends, because you care about me, I know you want to try to “fix” benzo withdrawal, so I don’t suffer anymore, but there aren’t any drugs or treatments that can cure it. Doctors are uneducated about the dangers of benzodiazepines and often prescribe medications or procedures that are harmful. It’s hard to suffer from a medical crisis that is misunderstood. People in benzo withdrawal are often told that they have Lyme disease, MS, CFS, ALS, OCD, Borderline Personality Disorder, Dementia, or other frightening illnesses. Frequently, benzo withdrawal patients are told they are crazy, its all in their head, or that their old anxiety or psychiatric issue has returned, which is usually not the case. Even people with no pre-existing psychiatric conditions present with symptoms that mimic mental illness. Once benzo withdrawal goes away, so do the physical, mental, and emotional issues that it causes.

If you’d like to help me, one of the best ways is to ask me, “What do you need, and, how can I help?” Those two questions give me agency over my life and help me feel more in control. If you offer suggestions or give me unasked for advice, that will cause my nervous system to react in a defensive way, which won’t be helpful. I’ve educated myself about benzo withdrawal, and I know what I should and shouldn’t be doing. You can also help me by being there if I need assistance with necessities. Make sure I have enough food and water or clean sheets and clothes. Check-in on me to make sure I’m doing okay. A phone call, text, email, or a video chat are all welcome and very helpful. To know I have a support team who loves me and is there for me is priceless.

Because my brain and nervous system are damaged, they don’t cope with stress very well. That means that the pandemic is making my benzo withdrawal symptoms worse. I have so many scary and painful symptoms. I worry that my symptoms are dangerous and that I won’t heal. I need constant reassurance that I am safe and that everything will be okay. I might annoy you with my request to reassure me, but please be there to remind me that I am safe and that I’ll heal, no matter how many times I’ve asked before. It’s comforting to hear you. It helps me to hold on and to get through this.

I need love, support, understanding, and compassion. I am doing the best I can to recover from this chemical brain injury. Thank you for being there for me. One day, I’ll be well enough to pay your kindness forward. And, I will!