[Reposted on October 10, 2012 for World Mental Health Day.]
A shattering silence.
Oh, the nonsense we cancer patients have to put up with…
It’s not bad enough that we have to endure being slashed, burned and poisoned, but we have to endure unsolicited opinions, advice and ignorance about our emotional response to being slashed, burned and poisoned. All of which can leave us feeling as though no one understands how we are feeling, or wants to understand, or has any practical assistance to offer that might help us sort out how we are feeling. Some of us never find anyone to whom we can admit how hopeless, frightened, numb, grief-stricken and just plain sad we feel. And that can force us to exist behind a kind of force field of emotional pain from which it is difficult to escape, that our caregivers and physicians may not even acknowledge or recognize.
No matter how much progress has been made in the last several decades in the diagnosis and treatment of emotional and psychological disorders — and it has been considerable — there is still this stigma about admitting that we’re just not okay. Frequently, we blame ourselves for how badly we feel. ‘What’s wrong with me?’ we might ask ourselves. ‘Why can’t I just get out of my own way and shake this bad mood I’m in?’
I’ll tell you why. Because it’s not just a ‘mood.’ Because there is something wrong, but it’s frequently not what you or your spouse or your friends or even your doctors think it is.
The accidental depressive.
I grew up in a family in which every member suffered from depression at one time or another, or even most of the time. Yep, that’s right. I was an only child, which was not particularly helpful in such a circumstance. My mother suffered from lifelong chronic depression, with exacerbations and remissions sort of like multiple schlerosis, along with what I later recognized as a persecution complex and a paranoid personality disorder. My father suffered from what was probably dysthymia, which is a more moderate, sometimes low-level depression that exists as a kind of background noise. So, what chance did I possibly have to escape feeling depressed myself? None. I was a resourceful kid, so I managed somehow, but I remember having to beat back some very dark stretches of emotional misery even in grade school.
This was all happening in the late fifties, when I was a small child, and continued through the sixties and seventies. And it was still the dark ages as far as treatment was concerned. Back then, ‘mild’ depression might be treated with tranquilizers. And believe me, the last thing you need when you find it nearly impossible to get out of bed in the morning is a tranquilizer. More severe cases might get electroconvulsive therapy, aka ‘shock’ therapy, which was crude and painful and often left patients with cognitive and neurological disabilities. Great. My mother refused to be properly evaluated, and it’s probably just as well, because I’m convinced that the treatments she might have been offered would have made everything worse. My father’s medicine of choice was, for many years, alchohol, which is also not very helpful, but common. He finally kicked that when I was about ten, because one of his best friends and drinking buddies nearly destroyed every aspect of his life with alchohol, while the mother of one of my best childhood friends died of alcoholism, by means of liver cirrhosis. Nothing like life-threatening consequences to scare someone sober.
Now, many of you will read this, and think, understandably, that our family life must have been a full-out disaster. It wasn’t. My parents were actually highly functional, remarkably enough. My mother held a job from her early twenties until her early thirties when I was born, my father was never in danger of losing his, we lived in a small but nice house, I had clean clothes, enough to eat, and we had a lot of fun sometimes. They took me to museums and concerts and the theater, they read to me, played games with me, invited my friends to sleep-overs, mowed the lawn and washed the dishes and went to church, like normal people. We looked like your average family, except for the times when my mother was accusing the neighbors of conspiring against her, when my father was coming home drunk after his nightly visits to the local pub, when my parents were screaming and throwing dishes at each other during one of their dinnertime donnybrooks.
Fortunately, counseling therapy began to improve by the time I got to high school, so I availed myself of some. I remember that during my very first visit to a free clinic in Harvard Square, when I sat down with the psychologist and she invited me to tell her what brought me there, I burst into tears and cried for about ten minutes straight. I’m surprised it was only ten minutes. That was about 1970. There were some halfway decent tricyclic antidepressants by then, and some early understanding of the role of neurotransmitters, but the average depressed-but-functional person did not usually get them unless they were hospitalized or attempted suicide. It wouldn’t be until 1987 that selective serotonin reuptake inhibitors hit the market and gained wide acceptance. [see A Brief History of Antidepressants, Time Magazine.]
Once I left home and got a job with health insurance, but before the advent of SSRI’s, I found a wise, intelligent, compassionate psychologist who got me through the ’70’s and ’80’s by helping me gain some insight and develop a bag of tricks that got me through the profound wilderness of recurring depression, including one particularly bleak period that included agorophobia and suicide ideation. By the time I experienced that unpleasant crisis, I was an experienced and well-therapized patient, and I was able to recognize my behavior and thoughts as symptoms, not take them personally, and reach out to my therapist for some extra emergency sessions. By 1994, when my mother died, and my grief threw me into one of those characteristic ditches during which it took all the willpower I could summon to get out of bed in the morning, I finally took an SSRI, zoloft, and heaven bless me, it worked!!! After years of employing my considerable and creative strategies for getting through my bouts of depression, it was nothing short of a bloody miracle to feel the clouds lift due to nothing more strenuous than taking a pill every morning.
Busting the blame game.
I’m telling you all this because I’ve become something of an expert at recognizing and dealing with depression — my own, as well as other people’s. And along with that, I’ve also become something of an expert at recognizing all the myths and misconceptions that people foist upon themselves and others who may be suffering from depression. When I was diagnosed with cancer, I considered myself lucky that I was so well-equipped to at least be able to forestall most of them. But I know that many cancer patients aren’t so lucky. So, I want to share some of them with you.
1. What am I doing wrong?
Don’t blame yourself. It’s not your fault for feeling so wretched. It’s an imbalance in your neurochemistry. Really. Depression is an illness. A treatable illness. Yes, it’s not fair to come down with another illness when you’ve already got cancer. But it happens when we are traumatized. Losing a job, losing a loved one, losing your home in a fire or hurricane, being flat broke, having a heart attack, having a knee joint replacement, having a car accident, going through a divorce, getting cancer — any one of these things can throw us off, plunge us into fight-or-flight overkill, tax our immune systems, rearrange our brain chemistry, and cause depression. There has been much more research in the past few decades into the physiological processes that occur in our bodies resulting from extreme stress that has demonstrated the links between traumatic events and depression. Here is just one editorial article that outlines some of them: Causal Mechanisms and Links Between Trauma and Health.
2. It must be a character flaw.
This is entirely false. I run into this one in a lot of my older patients, who are from the ‘pull-yourself-up-by-your-bootstraps’ generation. But the belief that the onset of depression symptoms is the mark of a weakness of will, or a flaw in one’s character, continues to be pernicious, even among healthcare clinicians who should know better. Indeed, I think for many people, it takes remarkable strength of character to face up to depression, get help, and live well in spite of it. A lot of intelligent, successful, accomplished people have battled depression, people like Sixty Minutes journalist Mike Wallace, novelist William Styron, Mad Men actor Jon Hamm, acclaimed actress Ashley Judd, Olympic gold-medalist Amanda Beard, to name but a few. These are not people who lack character. They are human beings who suffered an illness from which none of us is exempt.
3. Maybe it’s my personality.
While there are, indeed, disorders of personality, like the paranoid disorder that my mom had, what we perceive as personality in everyday terms is the complex and intriguing combination of thoughts, social behaviors, beliefs, and responses to life that each of us presents to the world. Even the most seemingly boring person has a personality, if not perhaps a particularly interesting one. We may be extroverts or introverts, we may be humorless or silly, but there is nothing intrinsic in any type of everyday personality that sets a person up for depression. We humans are not one-dimensional, and neither is life. We can laugh, feel sad, be surprised, express compassion or erupt in anger, all in the same day, sometimes even at the same time. There’s nothing to be gained from picking apart your personality — or in being picked apart by others — because you feel depressed. There is no point in comparing the way you feel about having cancer to the way someone else feels about having cancer. And there is certainly no sense whatsoever in comparing how you feel about having cancer to the way someone else feels about your cancer.
One thing you can count on for certain: there is no one way, no ‘right’ way, to feel about having cancer. In fact, anyone who claims to feel that having cancer is the best thing that ever happened to them is someone who is truly deluded at worst, or woefully inarticulate at best. There are people who claim that cancer itself is a ‘gift,’ but I doubt they’d want to gift-wrap cancer and present it to someone they love.
But one thing is always true: however you feel about having cancer is perfectly valid, nothing more, nothing less. And anyone who tries to tell you how you should feel needs to shut the hell up. The thing we all need for whatever we feel is validation, compassion, understanding, acknowledgement. We need to be listened to, not judged. And when we feel overwhelmed by our feelings, we need support, kindness, and competent help.
4. Maybe I have the wrong attitude.
Oh, don’t get me started…
One of the worst things about having breast cancer — or any kind of cancer — is being flogged about being ‘positive’ by the folks who have evidently swallowed what I call the Pink Koolaid. This is merely a variation on the themes in the previous section. Some people seem to think that they have the right to tell us exactly how we should feel, what we should believe, what kind of attitude we should have, which, naturally, is sure to make a difference in how successfully we recover. So, I guess the 40,000 women who died of breast cancer last year had the wrong attitude. Bollocks. This is nothing short of tyranny by delusion. The best response to people like this is to recognize them for the rabid creatures they are, grab the nearest chair and perhaps a tranquilizer dart gun, and beat them out the door before they start foaming at the mouth. These people are dangerous. Just being with someone like this for five minutes makes me depressed. If all else fails, you might try calling your local Animal Control Officer.
Beyond the myths.
1. Recognizing the monster.
One of the most remarkable experiences I’ve ever had was the first time I found myself having thoughts of suicide. Because I was no novice in the realm of depression by then, I was luckily able to realize that they were only thoughts, and that these thoughts were symptoms, that they did not represent a genuine desire on my part to end my life. But I was informed and educated about this. I did not take it personally. I was, despite being depressed, a happy, fun-loving, occasionally silly, and generally competent human being at the time, so I was gobsmacked to hear these thoughts in my head. It’s amazing how powerful an affect a neurochemical imbalance can have on us. And I knew that suicide ideation was just a way that my brain was expressing my urgent desire to stop feeling the way I felt, to acknowledge that I was in over my head, and to get help.
But I was plugged in already, and I knew what the monster looked like, and I had access to ready and competent assistance. When you don’t recognize the monster, or even realize that the monster has taken up residence in your psyche, you may not realize that thinking of ending it all is a symptom, not a directive. Yes, do pay attention to these thoughts, but realize that the action you need to take is to tell someone who can help you feel better.
I was prompted to write this post because, just this week, a friend of mine was told by another friend of hers about a woman who was struggling through radiation treatment for her cancer, and killed herself. This is a shocking and tragic story, and one that should not and need not have happened.
Unfortunately, many of us are never informed about or evaluated for the symptoms of depression when we are diagnosed with cancer. And we should be. In his website article, Depression and Cancer, journalist, author, blogger and bipolar sufferer John McManamy reports that current studies have found that about “25 percent of cancer patients will experience major depression over the course of their illness. People with cancer are three times more likely than the general population to develop depression, and twice as likely as other hospitalized patients. The greater the pain, the more likely the depression.”
He writes further that,
The consequences of untreated depression can be severe.[…]Estimates of cancer patients who take their own lives range from twice the incidence of the general population to ten times.
Ironically, owing to the intensely horrific nature of cancer, not to mention its treatment, it is not uncommon to dismiss a patient’s depression or suicidal ideation as normal. “I’ll throw myself out the window if I have to go for chemo one more time,” sounds perfectly appropriate coming from a person who has been through far too much, already. As a result, many physicians do not look for depression, or assume that because depression is a normal reaction to cancer, it does not merit treatment.
It may be normal to be depressed when we have cancer, but we need not make ourselves live with it as a matter of course. The American Cancer Society has a thorough discussion of depression, and other emotional side effects of cancer and cancer treatment on its website, including how to help someone you know with cancer who may be depressed.
The signs of clinical depression, as described on the ACS site, are listed as these:
Symptoms of clinical depression
• Ongoing sad or “empty” mood for most of the day
• Loss of interest or pleasure in almost all activities most of the time; feelings of lethargy or apathy
• Major weight loss (when not dieting) or weight gain
• Being “slowed down” or restless and agitated almost every day, enough for others to notice
• Extreme tiredness (fatigue) or loss of energy
• Trouble sleeping with early waking, sleeping too much, or not being able to sleep
• Trouble focusing thoughts, remembering, or making decisions
• Feeling guilty, worthless, or helpless
• Frequent thoughts of death or suicide (not just fear of death), suicide plans or attempts
Keep in mind that some of these symptoms, such as weight changes, fatigue, or even forgetfulness can be caused by cancer treatment. But if 5 or more of these symptoms happen nearly every day for 2 weeks or more, or are severe enough to interfere with normal activities, encourage the person you are caring for to be checked for clinical depression by a qualified health or mental health professional. If your loved one tries to hurt himself or herself, or has a plan to do so, get help right away.
The National Cancer Institute also has a thorough section on depression and cancer on their site, which is presented in two versions — one for patients and one for healthcare professionals.
2. You are not alone.
One of the most common things you feel when you are depressed is that you are completely alone, isolated by your feelings, that no one could possibly comprehend how you feel because you scarcely comprehend it yourself. None of that is true. Honest. Although it may be cold comfort for some, it was a huge relief for me to realize that the neurotransmitters circulating in my brain and body, by simply being out of balance, could wreak this havoc, that I wasn’t irretrievably ‘flawed,’ and that therefore I could get better.
But far and away, one of the most helpful things I ever realized about depression was that I was not alone, unique, not weird, not some damaged, feckless idiot for having depression. There is nothing like talking with someone else who’s been there, done that, got the teeshirt, to help you find your way out of the wilderness that is depression.
3. Online and in-person peer support.
Following are some online support forums for people with cancer and depression:
Here are a few search tools to help you find local, in-person support groups and services for breast cancer and other cancers, as well as for depression and other mental illnesses; click on the appropriate links at each page to find listings for groups in your area:
NAMI – National Alliance on Mental Illness — State and Local Programs. There is also a link to their online forum on the left sidebar.
And finally, here is a post that tells a little more of the story of my family legacy of mental illness, and how I’ve coped: Sleeping With The Light On. You may also visit some of my previous posts by visiting the archive at The Vault. Or find the Search box on my right sidebar and look for a topic. I have written many posts about feelings, attitude, depression, fatigue, and grief, and you may find something among them that resonates.
After all, I’m still here, still stringing words together, still reasonably sane. And so are you.
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