Life at the intersection of health and mental health: To Sleep, perchance to dream

In Act III, Scene I of Shakespeare’s Hamlet, Hamlet speaks those words in his famous “to be or not to be” speech. Most consumer advocates know the importance of sleep in symptom management. Ensuring that you are getting enough sleep is actually one of the most critical things many of us living with mental health issues can do to improve our wellness. Without good sleep, our symptoms magnify and our resiliency crumbles. Sometimes I wonder if instead of hospitalization, all many of us really need is the chance to sleep.

Unfortunately, sleeplessness is one of the common side effects of chemotherapy. One I experienced quite a few nights.

I’ve talked a little bit about the exhaustion I’ve felt as a side effect of the chemo. But to me, the exhaustion is completely different than the effects of not sleeping. The exhaustion was a general weakness – I often could not walk to the mailbox to get my mail. Cognitively I would struggle, my speech slowed down as a result of the exhaustion. But I had no urge to sleep like I do when I am exhausted from lack of sleep. The exhaustion from the chemo never had me nodding off in the middle of a meeting – no that came later as the effect of too many sleepless nights caught up with me.

And for me the mixture of exhaustion and sleeplessness was very dangerous. As my exhaustion and sleeplessness combined, my depression built. I was not depressed about having cancer, I was clinically depressed. It wasn’t about something going on in my life; it was a specific chemical response to the chemo and to the resiliency robbing effect of the exhaustion and the sleeplessness. I was prescribed sleeping pills but I did not dare fill that prescription. Remember that Hamlet quote?

“To die: to sleep;
No more; and by a sleep to say we end
the heart-ache and the thousand natural shocks
that flesh is heir to, 'tis a consummation
devoutly to be wished. To die, to sleep;
to sleep: perchance to dream: ay, there's the rub”

Hamlet, Act III, Scene i

Hamlet’s craving for sleep reflects very accurately what I and others like me feel when we are very suicidal. For example, one woman said, “Some days I could do nothing but sit and cry. Breathing itself was an effort. I felt immobile, frozen in place. The pain of living was immeasurable. I tried to find a place to put the pain and found none. It was not so much that I wanted to kill myself – I just wanted to be dead (a fine-line difference). I just needed relief from the constant and growing pain”

This woman wanted the relief death could bring – to sleep and not experience the pain her mental health challenges were causing her.

During this time, my depression became so great that at the same time I was doing everything to save my life from the cancers in my uterus and breast, I also was trying to fight the depression I was experiencing that was urging me to kill myself. I could not allow myself to have access to sleeping pills. 

So instead I beefed up my WRAP plan and worked it; I talked to my psychiatrist and asked for increase in my depression fighting medications. I reminded myself that this is temporary. I leaned on the support my sister and others gave me. I was extremely unpleasant to be around and made lots of mistakes with relationships and work during this time. But I survived.

Three system observations from this experience:

1) I wonder if providers know that it is likely that our symptoms are going to flare up as a result of chemo. I do not care what diagnosis you have, if you are not sleeping and are experience all these other side effects, your behavioral health symptoms are going to increase. It would be helpful if behavioral health providers understand that this is likely, watch for it and help consumers prepare for it.

2)  I also wonder if behavioral health providers and consumers understand the critical role of sleep and are empowered with tools and resources to help.

3)  In the hundreds of interactions I had with my cancer providers, I think I was asked about my emotional health three times total. And at least one of those times, the advice I got was to “think positive thoughts,” which is not really helpful when you’re facing clinical depression. It seems to me that we need to do a better job helping cancer providers look for and respond effectively to the likely increase of mental health issues.

At the end of the day, unlike Hamlet, I never feared my dreams, I just wanted to sleep and experience them. Good or bad, happy or sad, what I wouldn’t give to sleep…