July 11th is World Benzodiazepine Awareness Day.

For me, this is a reminder that medicine is not a one-size-fits-all proposition. During the years I struggled with Premenstrual Dysphoric disorder and anxiety from undiagnosed autism, I had benzos handed to me like candy. Not like candy from a friend who wants to share, but more like candy from the guy in the van who wants to abduct you.

I complained to the doctors who prescribed them that they made me feel sad. They made me feel sick and slow.

“No, your mental illness makes you depressed, not the medications! You’re sick because you don’t take these medications as you’re instructed to take them,” they’d insist as they pressed fresh prescriptions into my palm.

I look back with gratitude to my younger self for my non-compliance, which likely saved me from a prolonged and devastating withdrawal, or even suicide. I hated the way the benzos made me feel, so I never took them as prescribed. I was the object of many stern lectures from psychiatrists for my refusal to take them on a daily basis. Interestingly, the same doctors who lectured me for refusing to take my meds, were the same doctors who failed to caution me about the addictiveness of benzos, or the agony some people experience when trying to withdraw from those medications.

But this is only one part of the story. During the years I took drugs like lorazepam intermittently, which was a handful of times a month, I had very few of the near anaphylactic allergic reactions I’m have more often today.

Why? Because benzodiazepines are mast cell stabilizers. The very drugs that made me  depressed enough to have suicidal thoughts may have been saving me from life-threatening allergic responses.

I can never choose benzos to treat my mast cell disorder, but I support the informed decision of other mast cell patients to do so. The issue isn’t about inherent properties of a drug. It’s about the importance of providers being educated on how drugs can affect different people with different conditions, metabolic rates, and genetic mutations, and using that education to cautiously and appropriately prescribe. It’s about physicians fully educating patients on potential benefits and risks. And it’s about physicians listening and believing when their patients report adverse side effects.

As consumers of health care we should extend the same courtesy to one another. We should be compassionate and open-minded enough to recognize that a modality that is hurtful to some of us should remain available, because it may be the only effective treatment for another person. I know people with devastating multi-system mast cell disease whose lives were saved by the same benzodiazepines that have killed other human beings. We need to fight for education and understanding, not eradication.


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Twilah H is a recovering patient. She studied Philosophy with a concentration in ethics at the University of Kansas. Through writing, meditation, relationship building, and quilt creation she has found a place of peace.

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