As of late, we’ve made great strides in the Jewish community and in the world at large as we campaign against the stigma that surrounds mental illness and substance use disorders. We’ve been starting to acknowledge them as real and concrete health issues. We’ve been spreading awareness about their existence and how to spot them. Some personal war stories are being shared publicly. Support networks are spreading.
We have a long way to go in terms of medical insurance, but some effort has been made toward more easily, equally, and financially accessible health coverage (see the Mental Health Parity and Addiction Equity Act [MHPAEA] and the Mental Health Parity Compliance Act of 2019). Hey, it’s a start. Let’s not talk about life insurance yet, though. We’ve gone pretty much nowhere with that, and it’s a topic in its own right.
But as a society, we’re moving forward in recognizing that mental illness and substance use disorders are serious public health issues that affect both people who have them as well as the family and friends who care about and for them.
Along this journey toward public awareness, I think that it’s helpful, if not crucial, to understand for what and for whom exactly we are fighting. We talk about stomping out stigma and creating support groups and working toward better mental healthcare quality and coverage, among other efforts—about which I am thrilled. That’s all on the outside, though. In a way, even spreading education about symptoms (which, again, is crucial), also, still, only cracks the surface.
I want to know what it’s like on the inside. I can speak here only of mood disorders, which include depression and bipolar disorder. I have my own understanding as someone with a mood disorder, but each individual’s experience is different. What I want to know and what I want you to know is the following:
How does it feel to have a mood disorder? And how does it think to have a mood disorer?This second question may be oddly phrased, but what I mean by it is that mood disorders affect not only mood, but thought as well. Although depression and bipolar disorder are not by definition “thought disorders,” they certainly affect a person’s thinking — which, in turn, affects mood, which then affects thoughts, and there it continues in its merry-go-round of emotions until the ride is stopped or runs its course.
What does it feel like? What does it think like? What’s the experience?
Rather than going on and on with my own response to these questions (and believe you me, I certainly have the capacity to do so), I’d like to share with you the views of other people with mood disorders. I believe that it’s important for you to understand this, as much as you might, in the words of those who experience and manage these disorders every single minute of every single day. And to those of you who experience a similar reality — know that you are not alone in your triumphs and struggles.
In their own words:
“Mental health issues are draining; that’s the short of it. Sometimes you feel like there’s a band of pressure around your chest, keeping you from taking in much-needed, calming, filling air. You can’t calm yourself with deep breaths as your chest is locked and barred and closed for business. It’s not even hyperventilating, more like a heavy anchor lying on you, dragging you down with shallow malfunctioning intakes.
“Then there’s the various medications you keep track of, which might not play nicely with other vital yet enervating drugs, and both may contain side effects you’d rather do away with altogether. I once took an antidepressant that caused an overindulgence of sleep, which made it hard to function during the day. The solution? Remove the drug from my rotation, and suffer interrupted sleep as well as tearfulness. This was a recent decision, so time will tell whether these side effects go away or are yet more issues I have to combat indefinitely.
“And let’s not forget that depression or anxiety and the like can rear their heads and require professional intervention, such as with a counselor or therapist. I like to think that everyone, even those who aren’t suffering from a mental disorder, are like a spool of thread that has been unraveled, and that time and dedication, either solitarily or with professionals, will help wind the spool of thread taut. However, this is quite time consuming, frustrating, and (again, there’s that key word) draining, as you go in circles and cycles of issues like childhood, fulfillment, satisfaction, relationships, and a host of other concerns, all in an effort to gather up your strings and threads and wind them whole again.”
Regarding peer support, another person explains:
“I once tweeted, ‘The best part about being in a fandom is that when trying to explain something totally random, all you have to say is, “It’s like that time KIRK told VADER that GANDALF chose HARRY to operate the TARDIS and even SHERLOCK was surprised.” And the other person knows exactly what you mean.’
“Having a mood disorder is like being in a fandom. The difference is most people join fandoms because they like the thing, not because their brains are chemically set up for it. Life with a mood disorder is like being a fan before finding your fandom; trying to explain something you are passionate about to people who have no idea what you are talking about. Everyone looks at you like you are strange and they start to avoid you, so you become Eleanor Rigby; ‘wearing a face that you keep in a jar by the door.’ You hide, and put on a façade, a mask, and pretend like you don’t spend hours watching your favorite episodes frame by frame. You bite your tongue to correct a misquote and you don’t mention the obscure trivia you know. Because that’s just not done in polite society. And you live alone and in silence.
“It’s a hard life. One you did not choose and never wanted. One you cannot enjoy. But unlike a fandom, where you can quit at any time, you cannot quit your mood disorder. It will forever be a part of you. To never explain it, never talk about, creates a pain that makes life heavy. Too much to bear on your own.
“One thing that can help make it easier is finding someone who will listen to you go on about your fandom, even if they haven’t experienced it. But they try to learn, even a little, so that when you need to tell them about the next big plot point, they have even a vague idea of the story.
“That is called Support. Support is a lifesaver, because it tells you, ‘You are not alone in this. I am also here.’ And when you’ve found your tribe, who understand, or try to understand what you are talking about, the burden you carry becomes a little lighter.”
Another view on staying well is that it begins with a person accepting the mental illness in a compassionate, non-judging way. As one person reflects:
“Acceptance is key to staying well and staying focused on what works — medication, psychotherapy, and a healthy lifestyle. Living with mental illness (I have heard people speak that living with mental illness is less stigmatizing than struggling with mental illness or suffering from mental illness) doesn’t mean that you can’t have a ‘normal’ life — marriage, children, work.”
Shares the same person about mania:
“Unfortunately, due to the media, people often have a romanticized view of mania. But mania doesn’t always result in some great poem or painting; it can result in enormous trauma for you and your family. Mania isn’t always about feeling super human, but it can drive you to believe that the world is a horrifying place. Mania can result in forced hospitalizations and treatment trauma.”
One person vividly described the feelings and thoughts associated with being manic or depressed:
“I will start by saying that the part of having a mood disorder that involves actually calling it a mood disorder, exemplified in an opportunity such as this one when I can write about having a mood disorder, can be a huge relief. It puts words to internal experiences and sensations that had endlessly perplexed and devastated you and others. The very label can be a pressure release valve.
“My particular mood disorder feels like the volume being turned up on life. My therapist described it that way and it immediately resonated. The highs are high and the lows are low. Everything is heightened. Frustrations are extra frustrating. Joy is overly joyful. Sadness is total doom. Nervousness over one particular morning or even one moment can lead to days of agitation and fear.
“Moods, when you have a mood disorder, feel like unyielding and disorienting external structures built around you by some unseen force that you have to live within, rather than a transient and rationalizable series of feelings that come from and are controllable by some sort of ‘me.’ A mood disorder feels like feeling some ‘thing’ in a situation with a person or people or a place and becoming 100 percent fixated on all of the possible reasons for that feeling and ways that feeling connects with all feelings and all situations and all communities and all universes and the implications of all of that. Having a mood disorder can feel like being very proud of all of the interconnections you make and feel, as well as the level of depth you experience, and then also hating yourself for thinking that highly of yourself and thinking for that long about all of that stuff. You just ride it all out!”
This self-criticism is a common theme among those with whom I’ve spoken. Says one person:
“I usually liken depression to being in a hole, trying to claw my way up and out. Medication takes away the persistent feeling of dread that accompanies it. Depression, for me, is a state of dysphoria. There’s hopelessness mixed with guilt that I’m like this.”
Yet one more description, to which I particularly relate:
“Sometimes depression can feel like your worst enemy has gained control of your brain. They now control your thought patterns, your nerve-endings, your pain-points — and they’re using them against you in the most sadistic ways possible.”
Personally, I view a mood disorder as an actual “It” — a thing, a being, an interloper that hijacks the brain and pretends to actually be that person. An “It” that in itself thinks and feels in a cognitively destructive manner — whether in a depressed or manic or agitated state — but makes a person think that It is the actual person. And It doesn’t only affect a person’s inner reality. The inner world affects how a person acts on the outside, in the physical world.
It’s difficult — and understandably so — for others in that outside world to see that it’s the “It” at work, causing chaos on the inside. So that the repercussions for the person’s behavior and the reactions of others take place in the physical world. What’s going on mentally is beside the point.
In a nutshell, a mood disorder manifests both internally as well as externally. It’s a challenge to live with and it can take a whole lot of work to stay stabilized. And it often makes a person feel lonely. But there are things that help, small gestures by others that can make the difference between isolation and feeling heard.
“How are you doing today?” We can all start with that.
As we follow the course of reducing stigma, working toward better services, creating networks to help, and all the important efforts that are currently underway, we need to remember that we’re talking about individuals. We’re talking about individuals with experiences that are challenging, each in their own unique way. Individuals who, just like any of us, want to be understood. Individuals whose lives can be enriched were you only to notice them.
Reading their words helps. Reaching out is even better.
This article first appeared in The Jewish Standard. Dena Croog is a writer and editor in Teaneck, New Jersey, whose work has focused primarily on psychiatry, mental health, and the book publishing industry. She is the founder of Refa’enu, a nonprofit organization dedicated to mood disorder awareness and support. More information about the organization and its support groups can be found at www.refaenu.org. You also can email dena@refaenu.org with any questions or comments.