If we had been diagnosed with cancer, our family and friends would know that we are sick.They’d make us casseroles, take us to our chemo appointments, and call us to see how we are doing. After all, cancer is a serious matter, They would be concerned. But family and friends have very little knowledge about benzo withdrawal so they don’t know just how serious it is. This is what we wish they knew about benzo withdrawal.

We trusted our doctors and took a pill, as prescribed, and it damaged one of the two main “circuit boards” that regulate our brains. We have damaged GABA receptors, which means our bodies and minds don’t have the ability to slow/calm down. We suffer from chemical brain damage that can take a long time (sometimes years) to heal. Many of us have severe physical symptoms: painful joints, bones, muscles, teeth, eyes, mouth, etc. Our skin burns. It feels as if we have bugs crawling under our skin, or that bees are stinging us. Our muscles twitch and spasm. Our legs are weak and our balance is off; walking is difficult. But some of us do walk, and walk, and walk, as we are suffering from akathisia, a movement disorder that causes an inner restlessness and a compelling need to be in constant motion. We have painful and frightening pressure in our heads, making it feel as if the world is sloshing around us. Many of us are bedridden for months at a time, unable to take care of the most basic of human needs. We can’t think properly, and our memory is impaired. There are countless other physical symptoms that we may have as this is not an exhaustive list. What we want our friends and family to know is that we are sick and in pain. It’s hard to manage our lives. Many of us are unable to work or to function in our roles and duties as a parent. On top of being physically sick, we have mental symptoms as well.

Without a functioning GABA system to calm the fight/flight/freeze response of our brains, we live in a state of fear, anxiety, paranoia, or terror. We may have depersonalization or derealization. Frequent panic attacks are common. In benzo withdrawal, we lose the ability to feel positive emotions. Love, happiness, and joy are not within our reach. We slog through our days feeling a zombie-like doom and gloom. Intrusive and looping thoughts are common. We have very little control over our minds. Visual, auditory, and olfactory hallucinations are not uncommon. We wish that our friends and family understood how frightening it is to lose the ability to think rationally and to no longer feel as if you are the same person you were before benzo withdrawal. It is hard to live in the altered reality that benzo withdrawal can create.

We want friends and family to know that we are scared and oftentimes feeling hopeless. We need a great deal of reassurance. When we get scared that we will never get well; that we will never be ourselves again, we want you to remind us that we are healing. We know that we tax your patience, and we feel bad about being so needy. But we hope that you can hang in there with us as we do the hard work of holding on and surviving. We want you to take care of yourself so that you have the energy to take care of us too when we need your help. Please don’t burn out! It’s okay to take time away from us to refresh and recharge.

We know that the only cure for benzo withdrawal is time, so your suggestions to “Go see a doctor” or “Get back on your meds,” or “Up your dose,” doesn’t help us. See, what you don’t know is that the medical community understands very little about the damage these drugs cause. We’ve learned from thousands of others who have lived through benzo withdrawal. There are no meds for withdrawal, nor should anyone be on a benzo for more than a few days. Please trust that we have educated ourselves about the healing process from benzos.

We want our friends and family to know that benzo withdrawal will come to an end one day, (even if we don’t believe that ourselves). Our brains and our bodies will heal. We will start new chapters in our lives. We want everyone that we love to go the distance with us and to celebrate the dawning of the new day when we are recovered. Until then, we just need you to listen to us, to be there for us. We don’t need you to try to fix us; we know that you can’t. Just love us, exactly as we are, and where we are on our journey. We thank you and love you for being there for us while we battle an invisible, and medically ignored illness of great magnitude.

There is hardly anything of our lives that is recognizable in benzo withdrawal. We are doing the best we can with what we have to work with. We can’t magically think “happy thoughts,” or “snap out of it.” We have to wait for our brains to heal. Please, wait with us.