“I can’t eat and I can’t sleep. I’m not doing well in terms of being a functional human, you know?”
~~Ned Vizzini, “It’s Kind of a Funny Story”
“When you’re lost in those woods, it sometimes takes you a while to realize that you are lost. For the longest time, you can convince yourself that you’ve just wandered off the path, that you’ll find your way back to the trailhead any moment now. Then night falls again and again, and you still have no idea where you are, and it’s time to admit that you have bewildered yourself so far off the path that you don’t even know from which direction the sun rises anymore.”
With new crises seeming to develop on a daily basis across the globe, our news cycle is in overdrive, and critical conversations that had been taking place are quickly overshadowed by more recent developments. Just last week, the nation was discussing the loss of renowned comedian Robin Williams to the tragedy of clinical depression and suicide. I would argue that the questions raised by his death represent a conversation that must continue even as we focus on other critical events requiring our attention. My hope is that the below will play even the smallest part in that–and that it will well be worth sharing this if it assists even one person …
Like so many others this past week, I was shaken by the news of Robin Williams’ tragic death. Thinking of the depths of his despair is simply devastating. And the misunderstanding, cruelty, and ignorance some showed following this news were and remain bewildering and heartless. But even in light of such shameful behavior by some, what gives one heart is part of the legacy that Mr. Williams left as he passed—the honest, profound conversations that have been taking place by so many talented writers and bloggers who are openly sharing their own experiences with depression. With their thoughtful words, they have drowned out the angry and ignorant shouts of the foolish and have begun to bring understanding of just what depression is and why it is so crucial to receive help … because the sad truth is that there are so many misconceptions about depression, and there are so many things that depression is not.
It is not “feeling sad.”
It is not something that can be addressed by simply “trying harder” and “just getting over yourself and cheering up” (“advice” that some folks may give, which actually does much more harm than good).
It is not something others can truly understand if they have been fortunate enough never to have experienced depression themselves.
It is not a condition that can be solved by another’s judgment. Unfortunately, some may try to help by saying there are “so many others out there who have real problems” and “much more difficult lives,” but “they’re doing fine, and after all, you’re so lucky.” Lucky? Is there another word in the English language that has been misused by so many?
What clinical depression IS:
A serious mental illness that can be life-threatening.
You can probably tell that I have some anger about the misunderstandings surrounding depression, and that’s another reason why I feel it’s so important that this public discussion has finally begun to take place. And yes, this is personally driven as well. My family and friends will tell you that I used to be an extremely anxious person. And that would be an understatement. I was painfully shy, found it difficult to meet new people, dreaded any situation where I had to make “small talk,” and was enervated by any situation where I needed to be “on” for any length of time. Just one example: Shortly after I’d started a new job, I learned that I had to give a presentation at a conference six months later as a staff member—and I was a mental and physical wreck for all six of those months, absolutely dreading having to give that talk. If I was worried about something—and I was always worried about something—I’d go over it again and again, assessing and turning round and round every terrible possibility—until I was in full-blown catastrophizing mode.
Having such anxiety in and of itself was beyond awful. But then in my 30s, I found that there was something even worse. For quite some time, I’d been feeling not only anxious but “truly down.” But it was much more than that. Everything around me had begun to go gray, and I could see no colors in my life. I had absolutely no interest in food, and my husband found himself begging me to please just eat something. I went down to 90 pounds, because I just couldn’t do it. I was completely exhausted and had no energy, and I’d become a terrible sleeper, never getting sufficient rest, because my mind was far too busy with its catastrophizing. I had a wonderful husband and family who loved me, and I had survived a diagnosis of stage 3 Hodgkin’s lymphoma in my early 20s. I knew how fortunate I was. But over time, I had developed such deep anxiety that it led me into the quicksand and hopelessness of depression.
After far too many months, I finally heard the pleas of my husband and family and went to see a doctor, who immediately prescribed an SSRI. My first instinct was to strongly resist this, but I realized that I had to do something, because the quality of the life I had fought for so hard in my 20s was of no quality at all. But the effect was not what I’d anticipated or hoped: the specific medication I’d been prescribed almost immediately caused me to develop frightening adverse effects. Within a day, everything around me felt unreal, as if I were looking through a glass haze. When I spoke, it was as if I were talking under water, and I was uncertain on my feet. And with every day that went by, the haze became worse, and this scared the hell out of me. But I guess that the “good news” there was that by feeling frightened, I was feeling something, where before there had been nothing but numbness and absence. When I called my doctor about the side effects, he asked me to stop taking the medication immediately. Though he wanted me to try a different medication, I was simply too frightened to do so. Even so, this experience somehow loosened depression’s grip on me. Maybe it truly was the deeply disturbing side effects and the fear they caused. Perhaps it somehow reminded me that I did care about my own well-being, and I wanted to feel “like myself” again. Though it took time, I eventually felt that my eyes were completely open again, I began to see colors emerge from the gray, and I realized that hope and enjoyment had again entered my life. My anxiety was still a part of me, but its hold on me had lessened and with that the tidal wave of depression had receded.
But depression wasn’t done with me. If you’ve read my blog before, you know that I was diagnosed with breast cancer in my early 40s—yet it wasn’t the diagnosis in and of itself that caused depression to re-enter my life. I had already undergone my bilateral mastectomy and was just a few weeks into chemotherapy when I began to have terrible, painful side effects from medications I received with my chemo regimen. The pain soon became so horrendous that it was difficult for me to do even the most routine things, and all I could seem to focus on was how miserable I was and how hopeless everything seemed. I hit rock bottom when I was in my oncologist’s exam room, sobbing as I told him about what I had been experiencing. I told him that I couldn’t bear it, that I simply couldn’t go on like this. But what I didn’t say was that for the first time in my life, I finally understood the true meaning of despair. Though I did not speak these words, my oncologist heard them anyway.
He immediately started me on symptomatic treatment that gradually reduced and, with time, eliminated the terrible side effects, all while continuing my chemotherapy. And just as importantly, he gently encouraged me to begin treatment with an SSRI (selective serotonin reuptake inhibitor). But he knew me so well: that I would be extremely resistant to doing so (even though I hadn’t told him about my previous experience). He understood that I was tired of being on so many medications and that the last thing I wanted was to add another chronic med to my regimen. When he recommended beginning this medication, I immediately shook my head, but he asked me to hear him out. He talked about the fact that I would be starting Tamoxifen® shortly after completing chemo and that I could very well develop difficult hot flashes as a side effect. I didn’t immediately understand the connection there, but he explained that getting started on an SSRI could help to prevent or minimize the hot flashes associated with Tamoxifen. That was an explanation that resonated with me. But then he added with a grin that the specific medication he was recommending also had the benefit of “taking the edge” off any anxiety I may be experiencing: yes, he saw me so clearly. An extremely wise man, my oncologist.After a few weeks, I realized that the edge had indeed been taken off of my ever-present anxiety, and the terrible side effects that I’d been experiencing had almost ceased entirely, along with the sense of hopelessness, depression, and despair that had accompanied both. And as the weeks turned into months, I gradually came to realize that something was truly different—and was actually missing. Although I was still receiving chemotherapy, though I was exhausted, though I was bald … I was not anxious! For the first time in my adult life, I was experiencing life without anxiety as my constant companion … and it was and still is indescribably wonderful.
I am absolutely not one to see medication as the complete answer to everything. But my anxiety had a physiologic basis that was effectively treated with medication, by slowing and balancing the absorption of the neurotransmitter serotonin in the brain. (Serotonin is thought to play an important role in regulating mood and anxiety.) But what of my experience with the other SSRI years before? All medications may cause side effects, but some SSRIs are more likely to cause specific ones. Particular SSRIs may tend to be most effective without causing intolerable side effects. Yet with that said, one SSRI that works well for one patient may not for another. The SSRI I’d received years ago had a chemical structure unrelated to that of the other SSRIs, and perhaps that’s part of why it affected me so differently from the subsequent medication. And we know that a person’s genetic makeup impacts his or her response to particular medications, including the agent’s effectiveness as well as the risk of developing particular adverse effects. In fact, there is a rapidly developing field of study, pharmacogenetics, that focuses on the variations in drug response due to a person’s genetic makeup, which impacts the activity of drug-metabolizing enzymes. For example, if a person metabolizes particular drugs slowly, they may require lower, less frequent doses to prevent toxicity. So likely that original SSRI was simply the wrong drug for me, or the wrong dose, or both due to my genetic makeup. Finding an effective medication with few or no adverse effects may often be a process—one I wasn’t willing or able to do years before. Yet this time, thanks to the wisdom and gentle encouragement of my oncologist, I was. By hearing the words I didn’t say, he gave me a gift. Because the effect of this medication—at such a tiny dose—ultimately gave me myself back, a self without the horrible burden of a constant anxiety, an anxiety that at any time could whirl into the black hole of depression. (Also of note is that I ultimately had very few hot flashes after starting the Tamoxifen.)
So my heart breaks when I learn that anyone is affected by the terrible burden of severe depression and anxiety and knows the depths of the abyss that comes with despair. It is stunning to many of us that Mr. Williams—one who brought such joy and laughter throughout his life—struggled with depression “behind the music.” The media has reported that he had been affected by depression for many years—and that more recently, he had had open-heart surgery as well as the initial symptoms of Parkinson’s disease (PD), both of which alone are also strongly associated with depression. Though the reason for this is tragic, the nation is finally having a long overdue conversation concerning clinical depression and anxiety as common, potentially underdiagnosed and undertreated symptoms in patients with Parkinson’s disease. Just as tremor, rigidity, and slowness of movement are clinical symptoms of PD, for more than half of PD patients, clinical depression and anxiety may be as well. In fact, research suggests that with PD and other chronic neurologic conditions, such as multiple sclerosis, the disease process itself may cause changes in the brain that lead to depression. This national discussion is serving to raise awareness of the possibility of PD-related depression and why it is so critical to discuss such symptoms with a physician for appropriate diagnosis and treatment. Fortunately, recent research has increased our understanding of depression in PD and improved treatment options for patients.
It’s also important to note that any chronic illness may trigger depression, and overall, it’s estimated that up to one-third of people with serious medical conditions have symptoms of depression. In addition, per the National Cancer Institute (NCI), “Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients…Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.
Of course, everyone would agree that it’s normal to feel sad and extremely upset after being given a diagnosis of cancer, PD, or any serious and/or chronic condition. But some folks have greater difficulty in adapting to their diagnosis than others, and the symptoms of depression are different from the frustration, worry, and grief that can be felt after receiving such a diagnosis. Rather, there are recognizable symptoms of clinical depression that should be diagnosed and treated. As noted by the NCI in its PDQ® monograph on depression: “A critical part of cancer care is the recognition of the levels of depression present and determination of the appropriate level of intervention, ranging from brief counseling or support groups to medication and/or psychotherapy.” The NCI indicates that clinical or major depression has symptoms that last longer than 2 weeks, which may include the following:
- Feeling sad most of the time
- Loss of enjoyment and interest in activities that previously were pleasurable
- Changes in eating and sleeping habits
- Slowed physical and mental responses
- Unexplained tiredness
- Feelings of worthlessness
- Feeling a sense of guilt for no reason
- Inability to pay attention
- Frequent thoughts of death or suicide
If you are experiencing any such symptoms, please make an appointment with your doctor. Or if a loved one or friend has symptoms, strongly encourage him or her to see a doctor. And please remember: You, your loved one, none of us is alone.
“… if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it?— Carpe— hear it?— Carpe, carpe diem, seize the day boys, make your lives extraordinary.”
~ Professor John Keating (Robin Williams), from the movie “Dead Poet’s Society”
May you rest in peace, Mr. Williams.