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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.