How to describe BIND

I still don't know how to explain what it feels like to live through BIND, benzodiazepine-induced neurological damage, a term the benzo community created. Even within the community, the experiences of people in recovery are all unique. Here are some talking points I've relied on over the years to attempt to explain to people who haven't experienced BIND directly:

What is BIND

BIND is neurological damage and functional receptor changes that occur in people who took benzodiazepines and sleep drugs as prescribed by their doctors. Recovery can last from months to years.

Some people recover within a few months, some recover within a few years, others recover more slowly. People who went cold turkey or experienced kindling can take longer to heal. Kindling occurs from taking and withdrawing from sedatives several times, worsening the damage and lengthening the recovery time. Interdose withdrawal might be enough to severely kindle people, but there isn’t enough research to say that definitively.

Benzos can down-regulate GABA receptors. GABA is involved in regulating memory, cognition, motor function, mood, sleep, and overall nervous system balance. They may also up-regulate glutamate, the primary excitatory neurotransmitter.

There are over 300 possible side effects. This includes nerve pain, cognitive fog, stomach issues, insomnia, depression, emotional dysregulation, and weight loss and weight gain. These symptoms often temporarily disable people and disrupt lives, mental health, relationships, careers, and families.

Helping people understand

One of the biggest challenges is that there is often no framework for people to understand our symptoms and lived experience. I’ve found it helpful to compare BIND to conditions that are more widely known like concussion, post-concussive syndrome, long COVID, long Lyme, or stroke-like symptoms.

Explaining symptoms in a relatable way might help, too. Cognitive fog feels like a severe hangover that won’t go away, nerve pain like a blistering sunburn, perceptual changes like a bad acid trip, and benzo belly like severe stomach flu. Put together, it can feel like a full-body neurological and physical illness affecting thinking, perception, energy, and digestion at the same time.

Thanks to the work of benzo activists around the world, BIND and damage from other psychiatric drugs is becoming more widely understood and less stigmatized by doctors and the general public.

Limitations to understanding

It can be difficult for people to accept that a doctor-prescribed medication can cause so much harm. A lot of people deeply trust the medical system, and it can be unsettling to accept that their medications can cause long-lasting neurological damage. As a result, people may protect doctors and deny, minimize, or blame patients.

BIND is also a reminder of human vulnerability. Seeing someone who is sick can be a reminder of their own health and mortality. For younger people especially, that can be difficult to face so avoidance is easier.

Ableism also plays a role. Neurological damage, like other health issues, can lead to conscious or unconscious judgments toward people with disabilities or chronic illness who can't fully participate in life as they once did.

Another factor is that symptoms are often invisible. Some survivors may have visible symptoms, like weight loss or gain, but for many of us the symptoms are internal. People often don’t see that our internal experience is very different, and much more painful or uncomfortable, than what we present externally. It can be exhausting to act like everything is fine or like things were before benzos.

The long recovery time is another factor that is difficult for people, including people in recovery, to grasp. For many, recovery can take years, with set backs and gradual improvement over time.

The medical community has not invested much effort into researching the damage psychiatric drugs can cause. This may be benign, but it might not be. There may be reluctance to fully research harm in order to avoid patients losing trust in or questioning doctors. Researching in more depth may also bring into question the relevance of psychiatry, pharmaceutical interests, and the authority of Western medicine.

Responding to dismissal

If symptoms are dismissed as “just mental health,” it can help to explain that many people developed severe anxiety or became emotionally dysregulated after taking benzodiazepines for purely physical issues like sleep or pain. For example, someone took benzos for sleep after jet lag and developed severe anxiety and fear states they had never experienced before. Another person took benzos for stomach pain after childbirth and developed mental health symptoms they never had prior, which resolved after years off the drug.

If someone suggests addiction, it may help to clarify that most people were taking the medication exactly as prescribed and developed physical dependence and neurological and receptor changes.

The FDA has also issued a black box warning on benzodiazepines to inform patients about the risks of taking them as prescribed. There are also large online communities, including Benzo Buddies, with tens of thousands of participants, including medical professionals who were harmed.

Social boundaries

In the end, there are limits to how fully BIND can be understood by anyone who hasn't lived through it. We have to choose who we are open with and distance from people who don't put effort into researching and understanding BIND, or who don't behave in ways that support our recovery.

I know a few people in BIND who haven't told anyone, or only a few people, because they feel it's futile. Personally, I've tried to communicate what I can without harming myself. In my experience, older people, in general, who have their own health limits and struggles, tend to be more open minded and have the capacity to extend compassion. Connecting with other people in recovery from benzos has also been helpful.