But it’s not all in my head

How many ways do you know to say that someone is mentally ill? Crazy. Whacko. Nuts. Nut job. Loony. Bonkers. Batty. Cracked. Cuckoo. Demented. Deranged. Insane. Mental. Unbalanced. Mad. Psycho. Unhinged. To name a few.

How many ways do you say that someone has diabetes? How about to say that someone has epilepsy? Lupus? Arthritis? Cerebral palsy? Psoriasis? Asthma?

I detest the term mental illness. It is filled not only with stigma, but with the implication that no matter what a person’s symptoms, the MI diagnosis immediately negates any credibility of the person having an actual illness. Why have we semantically and culturally separated illness into two classes, one containing conditions of so-called legitimate health and the other being a collection of maladies considered to be shameful, willful, and self-induced?

Most mental illness is very much biological in nature; a clear genetic link also exists in many cases. Yet, if you say that diabetes runs in your family, you are likely to be met with a response that embodies sympathy and concern. Try the same approach with schizophrenia or bipolar disorder, and the recipient of that news is more likely to be horrified than anything else. It is a type of cultural cooties best kept to ourselves.

If you tell someone you are very sick with a neurological disorder, as I often do, you will probably have the opportunity to answer plenty of questions about brain function and malfunction, medications, lifestyle implications, and more. If you change it up and say you are very ill with a brain malfunction and then continue on and say you have bipolar disorder, get ready for the eye roll and shrug accompanied by, “Oh, is that all? I thought you were actually sick.”

Comedian Richard Jeni died recently. It was no secret that he committed suicide as his family was very frank about releasing this fact to the public. His parents wanted people to know that their son had suffered terribly and that they were not ashamed of his death. Instead, they saw it as the tragic result of treatment that didn’t work—at least, not fast enough. This week, for whatever reason, the coroner’s report came out. Jeni blew half his head off with a gun. The cause of death seemed pretty obvious. Still, the report was made public, and on CNN’s Website, the headline read simply, “Jeni had severe mental illness.” As if that just explains everything. That’s all you need to know. He was mentally ill, so he killed himself.

What if they had said, “Jeni suffered from chronic illness and could no longer tolerate the symptoms and depression it caused.” No such semantic finesse happened anywhere in the press in this case. There is no drama in illness, but the underlying implications of mental illness are fraught with sordidness. We mentally ill are sordid people.

We are second-class citizens in the health world. Insurance companies don’t feel they need to treat us (lack of mental health care parity is just an extra slap in the face). Employers have no impetus to cut us any slack or make accommodation. Culturally, it is perfectly OK to mock us. Mental illness is the stuff of sitcoms and stand-up routines, shocking news reports, and Law and Order-type dramas.

Why are those of us who have “mental” illness held to a different level of behavioral accountability than someone who, for example, suffers from an insulin reaction that causes erratic behavior? A couple of weeks ago, a man was kicked off of an Amtrak train in a rural area. He was disoriented and talking to himself. The conductors concluded he must be drunk or on drugs, and they removed him from the train. The outcry was swift when the story hit the press. “That poor man! He is diabetic! How could you?”

I wonder if the compassionate reaction would have been the same had the man had bipolar disorder or schizophrenia as his diagnosis instead.

I am not crazy, whacko, nuts, a nut job, loony, bonkers, batty, cracked, cuckoo, demented, deranged, insane, mental, unbalanced, mad, psycho, or unhinged. I am ill and I did nothing to cause my condition.

I can’t control the short circuits and chemical mix-ups in my brain, desperately as I wish I could. I didn’t ask to have BP, and I’ve certainly learned firsthand how awful and insidious an illness it is. It is doubly cruel in that it affects me with both physical limitations and cognitive/behavioral ones, as well.

I propose that we eradicate the term “mental illness” from all languages. I have an illness, plain and simple. It requires medication and lifestyle changes if it is to be managed. It is not a defect of thinking; it is a malfunction of the brain.

I vote for Neurobehavioral Illness.

Blessings counted

If you ever want to know who your true friends are, get sick. Let yourself be taken over by a stigmatized, difficult-to-understand illness that requires patience and compassion on the part of those around you. Perhaps you think that your friends will rally around you and share positive energy with you. They'll check in with you. They'll reassure you that they love you, warts and all. They'll send you encouraging messages and they'll call just to check in and see how you're doing. They'll tell you again and again that your wellness and survival matter a great deal because your very presence on this planet makes the world a better place. Or, you can brace yourself for what really happens.

Anyone with a neurobehavioral illness can tell you about the reality of relationships amidst the chaos of illness. While you are trying to keep yourself moving forward as you push past medication side effects, outrageous medical bills, doctor appointments, physical discomfort, and the stress of not wanting to go on, you may well find that you are walking that road alone. Very alone.

Is it human nature to abandon even the people we love when the situation becomes awkward or uncomfortable? For some people, it is. When they are used to knowing you will be there to listen, to help, to support, they are there, too. When they know they can count on you to be fun and funny, articulate, level-headed, and nurturing, they'll be there. When they know you can always come up with something interesting to do or to talk about, you will not be alone. However, you may be left grasping for explanations when you realize that if you don't fit your usual image, when you are not able to sustain the personality you have when you are well, when the going is difficult, painful, slow, and unpleasant, even the people you trust the most might bail out. Even worse, when you start to stabilize and heal, they may reappear, expecting things to be as they were before, because surely the coast is clear and your ordeal hasn't changed you a bit.

This situation isn't unique to people with neurobehavioral illness or depression. Ask anyone who has lupus, cancer, fibromyalgia, or chronic anything; all will tell you about the friends who were there and the friends who weren't anymore.

Someone told me that the reason people act this way in the face of discomfort is because they don't know what to do or say, so they fade back. They can't empathize enough to put themselves in your place because that is too frightening a thought to even contemplate. They can't imagine having to change and adapt to the new you, and anyway, it is far easier to walk away. In response to this, I say bullshit. You don't have to say the right thing or even anything at all. You just need to show your solidarity and keep reiterating that you care. Unless, as it turns out, you don't.

There is another side to this issue of friends. There is the story of those who stay, those who tenaciously hang on with you for the harrowing ride and for the long haul. In my case, I have been able to count those people on three fingers, and I am married to one of those. And then...there is a fourth person who entered my life amidst the fray, and I'll get to that in a moment.

Going through the life changes brought about by chronic illness really does set the stage for people to show their true colors. For me, much of this experience was devastating, at best, and disillusioning at least. But then, I realized that a dedicated spouse and two fearless, unshakable friends may be enough to get you through that long, dark journey of the body and soul. My love for these friends has gone to a level deeper than I ever imagined, and I know that these friends understand that despite the circumstances that have transformed me, ultimately, I am still me, despite those profound changes.

Sometimes, the cosmic forces send someone to you who you never saw coming, but who you needed more desperately than you knew. I am not religious, but I do believe in karma and cosmic blessings. When my struggle left me wrung out and wasted, I depended heavily on an Internet forum for support. Through this online community, I met one of the most special people to have ever come into my life. She didn't know me, yet she did--she understood me. She took the time to listen and to share her own experience as a means of showing me a way to understand my own. By way of the Internet and email, we became...friends. The real kind. The kind you keep, the kind you work to keep because to do otherwise would be an unconscionable waste of love.

Her birthday was this week, but I was the one who received the blessing and the gift. My newest friend came from out of state to meet me and to tell me how important this friendship is to her. We were together 12 hours, but it felt like a moment. It felt like we had always been there, together, laughing, talking, understanding. In an almost Hollywood-scripted coincidence, my other soul friend flew into town for a business trip on a moment's notice. For a short time, the visits of these two friends overlapped, and I sat there, wholly conscious of the love in my life and the blessings pouring over me. Perhaps even more importantly, at that moment, I realized I was letting go of the bitterness and anger that had twisted into my core. I could see that I no longer had any use for that kind of resentment. My friends were here, and I hoped that I would always remember to be present in their love, to never take it for granted, and to always, unfailingly give whatever I could whenever I could to be the best friend possible to these two women, my husband, and my other remaining friend, who also happens to live in a far-away state. I am responsible to hold fast to this precious treasure.

Divine providence is a thing of astounding beauty.