We are too quick to surrender to the realities of our illnesses

Recently, the widow of Robin Williams made a plea to neurologists.

Susan Schneider Williams’ plea, in the form of an editorial in the journal Neurology, aimed to help neurologists “understand your patients along with their spouses and caregivers a little more” and “add a few more faces behind the why you do what you do.”

Her article tells the story of her husband’s tragic physical and psychological battle culminating in his death from suicide in 2014. “Robin was losing his mind, and he was aware of it,” she writes, noting that he repeatedly stated, “I just want to reboot my brain.” As we now know, the devastating neurological effects were a result of Lewy body disease (LBD), discovered through autopsy three months after his death.

I’m writing this essay because of a sentiment I heard a handful of times following the news of this discovery: In general, that Williams’ death was exceptionally tragic due to the nature of the illness surrounding it. The comments I heard put an asterisk on his suicide because it was the direct result of LBD. Then just this last week I overheard a few women discussing Susan Schneider Williams’ article, which one of the women had read through a link on the Huffington Post. My eavesdropping awarded me this takeaway: “… but it wasn’t his fault. He wasn’t actually suicidal, the disease just made him feel that way.”

Some of the general remarks I have heard regarding the comedian’s struggle are based on the idea that it’s particularly tragic when an illness goes unidentified. The answer comes, but it comes too late, and perhaps an earlier diagnosis could have prevented some of the devastation or at least provided some validation along the way. Tragic, indeed.

But let’s talk about that one ugly word, provided by the overheard stranger. Fault. “It wasn’t his fault,” she had said, seemingly in an attempt to defend Williams. And while her statement about the differences between being suicidal and feeling suicidal seems woefully ignorant, they remind us of the reality of suicide: It is a choice, whether it feels like it or not. And when something has choice attached to it, we go ahead and give ourselves permission to tack blame right on there as well.

Blame is the hump so many mental health patients are never able to fully climb over. Our illness is in our head, which suggests we have some level of control. So why can’t we just control it already? The blame spirals to shame, and we convince ourselves that our suffering is not valid.

But Robin Williams got a “pass” in this woman’s opinion (as if he needed one) because a clear cut black-and-white neurological illness was at fault for his emotional instability. It wasn’t him, it was his illness.

In the end, sadly, it doesn’t matter. Because whether biologically diagnosable or not, people commit suicide because of how they feel, regardless of what causes them to feel that way.

Susan Schneider Williams implores neurologists “to be inspired to turn Robin’s suffering into something meaningful through your work and wisdom.” Her dedication to the fight against LBD was born out of the helplessness she felt as she walked alongside her husband as his mind deteriorated. His rapid decline called for the relentless pursuit of answers while he lived, and his death inspires the desperate plea to bring healing out of his experience.

If I have a desperate plea, it’s that mental health patients would fight for themselves as Susan Schneider Williams is so desperately fighting in memory of her husband. A disease took something from her, and she’s not putting up with it. Neither should we.

Those us of with mental health struggles know what it’s like when the “way we feel” doesn’t line up with the “who we are.” We are losing our minds, and we are aware of it. And because we are aware of it, we feel shame that we can’t just snap out of it. It is shame that stifles our fight. We invalidate our own suffering because somehow we feel the suffering is our own fault. We are classified as majorly depressed or bipolar or OCD and then the symptoms just become the burden we have to bear, like so many others. We work with our illness instead of fighting it, because it has become a part of who we are.

I believe that we are often too quick to surrender to the realities of our illnesses. I speak for myself; I don’t want to fight because it is hard and exhausting, and because fighting means advocating for yourself and that means being transparent. Transparency is just plain scary, especially when you’ve spent so many years convincing yourself that you have something to be ashamed of. But it’s time to let go of the shame, absolve ourselves of fault, and start fighting back.