Empathy is hard but also necessary

I’ve been thinking, and talking, quite a bit about empathy lately. Specifically, the difference between empathy and sympathy. According to Psychology Today’s website,

Empathy can be defined as a person’s ability to recognize and share the emotions of another person . . .. It involves, first, seeing someone else’s situation from his perspective, and, second, sharing his emotions, including, if any, his distress.

In contrast:

Sympathy (‘fellow feeling’, ‘community of feeling’) is a feeling of care and concern for someone, often someone close, accompanied by a wish to see him better off or happier.

* * *

However, sympathy, unlike empathy, does not involve a shared perspective or shared emotions, and while the facial expressions of sympathy do convey caring and concern, they do not convey shared distress.

Similarly, according to the grammarist.com:

When you understand and feel another’s feelings for yourself, you have empathy.

* * *

When you sympathize with someone, you have compassion for that person, but you don’t necessarily feel her feelings. For instance, if your feelings toward someone who is experiencing hardship are limited to sympathy, then you might have a sense of regret for that person’s difficulty but are not feeling her feelings as if they’re your own.

Up until now, my concern with these different emotional states has been self-centered. I have focused purely on my desire to have others empathize, rather than sympathize, with my situation (i.e. being diagnosed with late-onset bipolar after a year of unmitigated hell; having my trauma and newly diagnosed chronic illness lead me to step away from my successful career as an attorney; feeling like a failure for not being a working mom; feeling like a failure as a mother for not doing every little thing, with patience and kindness, but instead having days of hypomanic screaminess).

These are all significant, big-life-picture emotions that I would like the people closest to me to share. I want them to stand in my shoes, to the extent possible, and look at the world as I see it. To share in my fear and distress as if these were their own feelings about their own lives. And to love me, forgive me and speak with me from that place of shared experience.

Feeling sadness for me because of my current situation is not good enough. It is isolating and dismissive. It suggests that the upheaval I am experiencing is mine and mine alone to try to understand and deal with. The sympathetic person may cheer me on from the sidelines, but he remains removed from my struggle. There is no mutual effort to combat my emotional demons, because I am the only one who knows what they are.

In short, I would like my closest people to make an effort to empathize, rather than sympathize, with my situation. I would like them to learn as much as possible about my illness, to listen to me talk about my depression, my hypomania, my fears and my shame. And then I want them to try as hard as they can to put themselves in my shoes, to look at the world through my eyes using my mind; I want them to see and feel what it is like to be me. 

Then, and only then, can we have a meaningful conversation about how to go on.

Without detracting from anything above, I recognize that empathy cannot be a one-way street. I cannot demand empathy from people without haven empathy for them, without putting myself in their shoes when faced with my request.

I need to feel the difficulty and frustration of trying to share the experience of mental illness when such an experience is totally foreign; and when the person requesting empathy is unable to fully communicate her own experience.

I am often at a loss for words to explain what it feels like to walk around with my mind doing what it does. Frequently, there are not adequate words to communicate how mind-numbingly dark, hopeless and repetitive depression is. Nor are their words for the tortuous struggle between wanting to feel “normal” and do “normal” things and never being able to because your anxiety makes the world feel like a giant fist pressing down on your chest until you die. And the shame. There is so much shame in knowing that from the outside you appear to be an otherwise functional human who is choosing self-pity, to give up, to be a pessimist, to run away, to hide, to give in to fear rather than face it. And there is the shame of knowing these outside impressions are not true, yet sometimes believing them yourself.

Conveying all of these feelings in a coherent way to a person with no direct, or even indirect, experience with mental illness is extremely difficult, if not impossible. But if I can’t explain my experience, how can I expect another person to empathize with me? Such a request would likely feel like an unfair, impracticable ask.

And, if I can’t explain my experience of mental illness in a coherent way, being with me must feel incredibly frustrating. Looking at me from the outside, with none of the internal context, it likely feels like I am a determinedly negative person who fails to appreciate what a wonderful life she has, no longer believes in herself, is afraid of her own shadow and constantly wallows in her illness. None of those things are true, but I can understand how a person might have those feelings based on how I act sometimes.

Even if my experience with bipolar disorder could be adequately explained, I expect it would feel incredibly painful to have to share in my distress. No person wants to see someone they care about hurt, let alone experience that hurt with them. Trying to avoid this pain would probably be most people’s first reaction; I know it would be mine. 

But I also know, from past experience, that my first reaction would not be my final one; that I would do whatever painful work needed to be done so that I could share my friend or partners’s painful experience and emotions. That is what humans do for the people they care about.

I understand that people have varying degrees of empathy, and while the ability to empathize can be improved, such improvement is not an easy or fast process. Asking someone to fundamentally change the way they act in relation to other people’s negative emotions, is not a small request. Even so, I believe it is a reasonable one, something I have the right to ask for from those closest to me. 

In short, do not bring me a casserole. Instead, come sit with me, hold my hand, listen, ask questions, say you are proud of me, ask how you can help. Be there with me, not just physically but emotionally, too. I need you to be in this with me, no matter how hard that might be for you.

There are no words

I have read a number of stories, blog posts, etc. about Chris Cornell and depression over the past few days. His death is an incredibly sad cultural loss and personal loss for his loved ones. It also exemplifies the simple truth that depression is indiscriminate. It does not affect a certain type of person; it is not the result of a character flaw or a lack of personal ambition; it does not care what you have achieved or how much you are loved. It is an illness caused by a chemical imbalance in the brain, a chemical imbalance that exists among millionaires and rock stars as well as the people who live next door. It effects the moms and dads and grandparents and teenagers who you know and even love. It is so much more common than you realize. Knowing this fact, really internalizing it, is a very important, powerful step towards de-stigmatizing mental illness and providing true support, even empathy, to those who suffer from it.

Even so, simply recognizing that depression is an illness is not enough. We need you to believe that depression is not something that can be “fixed” through personal effort or optimism. We need you to acknowledge that dealing with depression requires serious, often long-term treatment. It also requires fucking hard work just to survive. Many people who suffer from depression, myself included, put in more emotional work just to get to “normal” each day, than many people expend simply living their lives.  Having someone we love truly believe these truths about depression is an incredibly validating experience. It makes us feel seen and heard. It makes us feel less alone.

I have found the most difficult part in bridging the gap of understanding between myself and my loved ones is my inability to adequately describe what my depression feels like. Yes, it is caused by a chemical imbalance, but an imbalance that doesn’t cause any adverse feelings would be irrelevant. It is the feelings caused by the imbalance that make depression what it is. And those feelings are different for each person. However, in an effort to give some sense, some words to what depression can be like, I offer up my personal experience and feelings:

  • Depression takes me back; it examines every mistake I’ve ever made and forces me to physically and emotionally experience those past events. I feel the chest tightening, heart-wrenching pain of every loss. I feel the waves of shame starting in the pit of my stomach, traveling through my chest and then my face. I examine every major decision I ever made and sob at the imagined joy I may have missed.
  • Depression critically examines my current life circumstances and meticulously points out every area in which I am failing. It tells me, viciously and repeatedly, that I should be a better, more patient and loving mother who spends more quality time with her children. It tells me I spend far too much time on the mundane tasks of day-to-day household management rather than with my family. It make me feel like an inferior partner to my husband, who I now depend on financially; that I ask too much; that I don’t contribute enough; that I am a burden; that eventually he will leave me.
  • Depression also robs me of hope for the future. It tells me that my pain and regrets will never go away. I feel as though nothing will ever change or get better; that I will spend the rest of my life feeling overwhelmed by mothering three children, satisfying my husband’s emotional needs and keeping my own head above water. Depression makes me feel like no matter what treatment I seek, or how religiously I adhere to any doctor’s recommendations, I will never feel better, not in a sustained way.

Depression makes me feel all of the above, day in and day out, nearly everyday of my life. It is exhausting. It feels so unfair. Even though I know it is not my fault, even though I constantly preach that message, I still feel like it is my fault much of the time. How can I not? It is my own mind after all. Why can’t I just control it?

But I can’t, I can’t control it, or stop it, or fix it. Believe me, I’ve tried. Depression is part of who I am. It always will be. It is my monster. My internal demon that I will never be able to truly share with anyone else. I bear the burden. I will carry it, always. I will carry it as far and as long as I can.

 

My therapist is better than yours

Saying goodbye is hard, whether it’s to a loved one, a dear friend or your therapist. Earlier this week, I said goodbye to my therapist, who has become a dear friend.

There was nothing wrong with our relationship. She is, hands down, the most delightful and helpful therapist I have ever worked with. But, she does not have expertise regarding my specific illness, an illness neither of us knew I had until well into our relationship. Recently, we agreed I should meet with someone (a friend of hers actually) who has such expertise to see if a change would be beneficial to me. I had the meeting and decided a change would be best for my health. I will gain the benefit of a therapist with a tremendous amount of knowledge about my condition, including how to minimize my symptoms and improve my quality of life. But I will lose the benefit of an incredibly empathetic, validating and funny therapist, who has seen me through the hardest emotional period of my life.

I found Dr. Kerry by chance on the internet. I was searching for a psychologist who practiced ACT (Acceptance and Commitment Therapy) and wasn’t too far from my home or work (since I didn’t have any time to spare). When I discovered Dr. Kerry was an ACT practitioner, with an office six minutes from my house, who specialized in family dynamics and family related issues, I was elated. At the time (early spring 2016), I believed my anxiety and depression symptoms were primarily related to my responsibilities as a mother of three small children, particularly my less-than-one year old twins. I thought that if I could just learn how to feel less anxious, overwhelmed and hopeless about mothering, then everything would be okay. So I called Dr. Kerry.

I probably got out half a sentence about the reason for my call before I started crying. I kept talking though and she kept listening. Once I had gotten most of it out — about the three kids, the law job, the busy husband, the mountain of household responsibilities, the ever present anxiety and depression, the panic attacks and all the different meds that didn’t work — Dr. Kerry (with more empathy in her voice than I had heard in what felt like forever) said, “Oh honey, you must be so tired.” Hearing those words broke my heart wide open. I sobbed and sniffled and sobbed some more, overwhelmed with gratitude for this woman I had never met. Dr. Kerry was maybe the first person in my life to understand how hard I was working just to keep my head above water and how much it was costing me.

I think we spoke on the phone that day for close to an hour. Honestly, I think she was worried about me and wanted to make sure I was in a safe place, mentally and physically. We scheduled an appointment for that week and I have continued to see her weekly, or bi-weekly, ever since (except for my few weeks in outpatient treatment).

Seeing Dr. Kerry was like spending an hour with a fun friend who also happened to have expertise in mental health. She taught me the invaluable lesson that what is real, what feels real to me, is not always true; that I can validate my feelings as my feelings and still reject them as untrue (i.e. I feel that I am an incompetent mother because I become anxious and overwhelmed when alone with my children. In reality, I am a competent mother who experiences feelings of anxiety related to her children, as do many other mothers.).

Dr. Kerry always laughed at my jokes, which is essential to being my close friend. She also defended me against the mean part of my own mind. She encouraged me to nickname it to differentiate it from my actual self. I proposed Bitchy McBitchface but that proved to be too long given how often we talked about her. So, I shortened it to Becky. Man, I hate Becky (almost as much as she hates me). Dr. Kerry gave me homework, and you all know how much I love homework (really, I really do). And she forced me to meditate.

Meditation has never interested me because (1) I hate being still and (2) I hate being in my own head. These seem to be the two major components of meditation. Therefore, I had less than zero interest. But Dr. Kerry insisted that learning to be mindful, including by having a regular mediation practice, would improve my quality of life. It would force me to slow down, to pay attention, to just breath without doing or thinking about doing five other things. I felt my time was better spent doing the five things.

Since I am a lawyer and also a pretty good liar, Dr. Kerry had me download a specific meditation app which would time my daily meditations. I was to start with five minutes each day and she would check my timer each week. Of course, I could have just let the timer run without actually meditating, but I am honor-bound to do homework in the proper way. So I started to mediate, first five minutes a day, then 10, then 15. I found guided mediations most effective, because then I could listen to someone else speak rather than the voices in my head. And Dr. Kerry was right. Meditating did help me to be more present and still. I still don’t have a regular practice (which I should) but it is a skill I use when I need to feel more stable and less like a headless chicken running around my own life.

Dr. Kerry also taught me to pay attention to the way I talk about myself and my life. A single word can reveal a vast underlying dichotomy, such as what tasks or activities are okay/allowed/useful for me to do with my time and which are not. When all the “nots” turn out to be self-care that costs money and benefits no one else in the family but me, this is not a healthy state of mind. It suggests I do not value myself; that Becky is still there with her list of my insufficiencies and failures. It also directly contradicts my strong belief that what I do at home and with our children is just as valuable a contribution to our family’s well-being as my husband’s paycheck. All of this and more became apparent because Dr. Kerry noticed I used the word “allowed” during session. One word, one session, and I learned a valuable lesson that will benefit me for as long as I use it.

Direct identification of problems and proposed solutions were a hallmark of Dr. Kerry’s practice. If I didn’t feel safe, I needed to specifically identify and contact at least three safety people. If my home life was triggering my illness and making my symptoms worse, I needed to identify and implement specific changes that would alleviate my anxiety and depression. Week by week, Dr. Kerry helped me to survive my life. She gave me hope that things could get better. No words can adequately express my gratitude for these gifts, but I could not move forward without some expression of thanks for what I have been given.

Thank you, thank you, thank you for all the things. I miss you already and wish you the very best of all my wishes.

Weaving a parachute out of everything broken

Things have been rough the past few weeks. Major depressive episode plus extreme anxiety is the most awful mental state I have ever experienced. I walk around all day, every day worried, annoyed and even angry that everything in my life is a mess (e.g. my house, my backyard, my car, my kids, my professional life) but am too depressed to do anything about it. In other words, I am simultaneously furious about all the things that need to be “fixed” and overwhelmed by the idea of fixing any of them. It all feels too pointless to bother.

As I’ve struggled, my ruminations have gone from broad to very narrow. Now, my mind endlessly pleads to go back, back to being the person I used to be before all of this shit happened. I remember years of consistent psychological stability; kicking ass at multiple tough jobs; reading great big books because I could both concentrate and sit still. I remember eating amazing food on dates with my husband, making him laugh from across the table without having to consciously work at it. I remember being good and relatively content — as a person, a friend, a wife, a co-worker — without having to do anything except be myself.

All during the year leading up to my breakdown, I felt my confidence, my sense of self, my values and beliefs, slipping away. People close to me can readily attest to my abnormal behavior, including substance-abuse, lying, recklessness and poor work performance, assuming I showed up at all. There were days when I got up, got dressed, drove my son to preschool and then simply drove back home and went to bed, instead of going to work. By the end, all I could do without significant effort was sleep and cry.

Taking leave from work to go to treatment was a very hard and, to me at the time, a very shameful decision. It felt like admitting I was weak, like pulling back the curtain and revealing I wasn’t who everyone thought I was after all. I was an imposter, a fake and all my efforts to prove otherwise had not only failed but had broken me in some fundamental way.

Despite my misgivings, I left work and went to IOP and doing so probably saved my life. Without a proper diagnosis and proper medication, I doubt I would still be here. But that doesn’t mean things are easier now. Being diagnosed with late onset bipolar disorder 2 did not provide a map for getting back to who I was. It confirmed that the woman I was no longer exists.

Often, I feel I am walking around inside the shell of the person I used to be, looking at the world through her eyes, living in her house with her family, mothering her children and working to build a strong relationship with her husband. But I am not her.

We look quite similar on the outside, but on the inside we are two different people. The small cracks that appeared in my mind after the twins were born grew into canyons under the pressure of mothering, working and caring for our household, without taking any time to care for myself. Eventually, those canyons split entire continents of psychological existence apart and those continents floated away. I do not think about my life or live it the way she did. And it breaks my heart to know she is gone, that I will never be her again.

There is no going back in time to when I did not have a bipolar disorder, or three small children or a sense of ease and confidence in being myself. There is only me as I exist today. 

There is the hard work to stay well and to care for my kids. There is the hard work to dig deep into my marriage so it can be the rock our kids stand on to feel safe. There is the courage to be vulnerable in asking for what I need and expressing my disatisfsction with the status quo without knowing what the response will be. There is the constant internal battle between what I know I can do and what think I should do to contribute to our family’s well-being, while also respecting my own needs and health. There is guilt and relief, fear and freedom. Most of all, there is a lack of certainty about pretty much everything.

What I do know is that she, the woman I was before, is gone. And mourning her is wasted time and energy better spent living my life now. “Unanticipated” is not an inherently negative word. It is synonymous with, among other words, fortuitous, stunning and amazing. I plan do whatever it takes to eventually use one of those words to describe the result of the unanticipated turn of events in my life. 

I will weave my parachute out of everything broken; my scars will be my shield; and I will jump.

 (The italicized sentence above and the title of this post are paraphrased excerpts from William Stafford’s poem, Any Time, which, like all of his poetry, is fucking amazing).

 

 

 

 

 

Please describe the source of your condition

I’ve been wrangling with some insurance folks lately. The title of this post, or some iteration thereof, has appeared in every request for information I have received: Please describe the source of your condition. I suppose if I had a broken leg, this might be a reasonable request, but for any mental illness, this request is practically, and most likely scientifically, impossible to comply with.

The first time I received a form asking me to describe the source of my bipolar disorder, I just stared at the form for awhile and then laughed out loud. The absurdity of the request was confirmed when I realized the form provided less than four blank lines to write my answer. Since then, some forms with the same request have allowed for the attachment of additional pages “if needed.” The best idea I could come up with to be as accurate as possible was to write nothing except “see [most commonly used textbook on mood disorders, most current edition]” and also maybe “Talk to my doctors. You already know who they are and have signed releases to speak with them. However, even they probably can’t give you a comprehensive or entirely correct description of the source of my condition; but they are a hell of a lot more qualified to try than I am.”

Recently, a real live insurance company person asked me to provide this same information over the phone. I asked, only half-jokingly, how much time he had. I also told him I wasn’t qualified to answer the question and that he should speak to my doctors instead. He insisted that I provide an answer to the best of my ability and so I did. My unqualified, minimally researched, extremely speculative description of the source of my bipolar disorder went something like this:

My Genetics – I have a family history of bipolar disorder on my father’s side. While none of the people with this condition are part of my immediate family (e.g., father, mother, brother) they are only slightly removed. All of them are women. I also have a family history of substance abuse, an indicator of possible bipolarity.

My Brain Chemistry – Some researchers believe that neurotransmitters, like serotonin and dopamine, don’t function properly in people with bipolar disorder. Given that I was diagnosed with unipolar depression and have taken some kind of Selective Serotonin Reuptake Inhibitor (SSRI) since I was 18, it seems highly likely my neurotransmitters are dysfunctional.

My Postpartum Experiences – Some researchers believe that suffering from a postpartum illness like postpartum depression (PPD) or postpartum anxiety (PPA) is an indicator of bipolarity. I experienced significant PPA after our oldest was born and may have had significant PPD after our twins were born until that illness combined with other factors to become bipolar disorder. Also worth noting is the fact that women with bipolar disorder (known or unknown) who are pregnant or have recently given birth are seven times more likely than other women to be admitted to the hospital for their bipolar disorder.

My Hormones – In brief, pregnancy screws with your hormones in significant ways. Some go up, some go down, some make you puke, some make you super flexible, etc. Logically, a multiples pregnancy results in greater hormonal changes. Researchers believe that, particularly in women, hormones may play a role in the development and severity of bipolar disorder. Some possible examples of my hormonal train wreck after giving birth to the twins are that my pin-straight hair became wildly curly (hormones change the shape of hair follicles); I had no cycle despite not nursing; and, I had no acne, not one pimple, for over a year. Once I stared my bipolar meds, my hair became straight, my cycle regular and my acne plentiful.

My Life Circumstances – Bipolar is exacerbated by lack of sleep, an irregular life schedule or structure, and high levels of stress. Beginning in August 2015, I had two newborns plus a three year old, no predictability to my nights or days, very little sleep, and a great deal of stress, both home and work-related. Additionally, I took very little time for self-care because I believed my time was better spent doing other things.

Take the above five factors, put them in a cocktail shaker and shake for about 14 months. Open, pour and out comes my bipolar disorder II.

As you can tell from the above, I do not believe that I have always had a bipolar disorder and been misdiagnosed and improperly medicated for decades. For a long time, I experienced symptoms of depression, but so long as I took my Zoloft things were okay; often better than okay. After the twins were born, my Zoloft stopped working. We tried other antidepressants, antipsychotics, everything that seemed potentially helpful. None of it worked. Finally, I left work to enroll in an Intensive Outpatient Treatment Program (IOP) and that’s when I was first diagnosed with bipolar disorder II. Perhaps that diagnosis could have been made earlier in the year, but I don’t think it could have been made before August 2015. In short, I believe my genetic tendency for bipolar disorder was triggered by my physical, psychological and life circumstances at some point during the 14 months after my twins were born. This triggering resulted in a full-blown illness.

So that’s my description of the source of my condition. It is not well-supported by my educational background or research. I could not testify as an expert about it in court; but I am the best possible fact witness.

From what I can tell, there is very little known, as opposed to hypothesized, about the source(s) of bipolar disorder. The symptoms are often easy to spot but why those symptoms arise in a particular person is, at best, indeterminate. The above explanation of what happened feels correct; it makes sense to me. And that may be as much as I can hope for, as close to the truth about the source of my bipolar disorder as I will ever get.

 

Anxiety + Bipolar = ?; Mental Illness ÷ Access to Care = Bullshit.

As you might recall, my most recent post was about my anxiety symptoms. While my depressive symptoms have improved significantly since I started taking mood stabilizers, and my hypomania remains an enigma, my anxiety is pretty much as awful as it has ever been. True, I haven’t had a full-blown panic attack since stopping cymbalta, which is an indescribable relief. But, I still spend a good part of every day feeling like I an irrationally agitated, frightened, impatient and jittery worrywart.

Funnily enough, it only recently occurred to me that anxiety is not a typical symptom of bipolar disorder. The two poles in bipolar are (1) hypomania and (2) depression. As far as I can tell from Dr. Goggle, anxiety is most often present as a symptom in a person with a bipolar disorder in one of two ways. First, a person can have what is called an anxiety-based “mixed state” as part of their bipolar disorder, meaning they have either anxious hypomania or anxious depression or both. Second, a person can have a separate, co-occuring anxiety disorder.

There are many different types of anxiety disorders, like panic disorder, social anxiety disorder and obsessive compulsive disorder. From what I have read about the different anxiety disorders, it seems most likely I would be diagnosed with Generalized Anxiety Disorder or GAD. This disorder includes symptoms like:

  • Persistent worrying or obsession about small or large concerns that is out of proportion to the impact of the event;
  • Inability to set aside or let go of a worry;
  • Inability to relax, restlessness, and feeling keyed up or on edge;
  • Difficulty concentrating, or the feeling that your mind “goes blank;”
  • Worrying about excessively worrying (this one is my favorite and totally me);
  • Distress about making decisions for fear of making the wrong decision;
  • Carrying every option in a situation all the way out to its possible negative conclusion; and
  • Difficulty handling uncertainty or indecisiveness.
For anyone who knows me personally, I think we can agree that the above list describes me to a T. I do all of the things described above and while, at times, that has made me a very good attorney, it has not made me a very good partner or mother. In addition to the psychological symptoms listed above, the physical signs and symptoms of GAD may include:
  • Fatigue;
  • Irritability;
  • Muscle tension or muscle aches;
  • Trembling, feeling twitchy;
  • Being easily startled;
  • Trouble sleeping;
  • Sweating;
  • Nausea, diarrhea or irritable bowel syndrome; and
  • Headaches.

Again, this is pretty much my life (except the headaches part). So, it seems to me, in my vast expertise as a non-psychiatrist, non-psychologist former lawyer who gets much of her medical information from online articles, that I might have GAD in addition to BPII. If true, this is problematic.

The first line medications for GAD are antidepressants, except those don’t work for me anymore and, more importantly, could exacerbate my BPII symptoms. The second line medications for GAD are antipsychotics, many of which I tried last year and none of which helped with my anxiety, although they were great at knocking out my insomnia. Another category of drugs used for anxiety is benzos (e.g., Xanax, Ativan, etc.). I already take one of these meds, Klonopin (also known as clonazepam), every night for sleep and anxiety-related purposes. While it does help with sleep, I have felt little to no relief in terms of my daytime anxiety symptoms. Plus long-term use of benzos is generally frowned upon because they can be highly addictive and have nasty withdrawal effects (although not all psychiatrists agree that long-term use is bad).

So it seems I am in a bit of pinch. Whether my anxiety is related to my BPII or is a separate illness, I am not sure how it could be treated effectively without  risk, either in exacerbating my BPII or resulting in addiction. Luckily, I am not the one who has to make this decision; someone far more qualified and knowledgable about BPII and anxiety will do an evaluation and determine where my anxiety is coming from and how my meds should be adjusted. Unfortunately, I can’t seem to find a person, or a clinic of persons, with the expertise I need that doesn’t cost at least $400-500 for an initial evaluation and $200-300 for subsequent treatment sessions. No insurance accepted. Typically, therapy and med management occur once a week or once every two weeks; best case scenario then is $1000 for just my first month.

Of all the things that suck about having a mental illness, the lack of affordable care is right up there with not getting to drink alcohol and feeling like the world’s worst parent multiples times every single day. I realize that insurance companies are largely to blame for the deluge of mental healthcare providers fleeing the insurance system, but that doesn’t make it any less frustrating. If I need physical therapy, no problem, just pay my $25 copay and I’m good. If I need psychological therapy, not a single provider in my area who is accepting new patients is “in network.” Sure I can submit claims each month based on my out-of-pocket expenses, but until I hit my very high deductible, I don’t get shit back, despite all the money we pay each month in premiums. It’s a scam and, more importantly, it keeps many people with mental illness from accessing proper care. I am lucky to have the financial support of my family, which makes my care possible (although it may not be enough to support accessing the particular expertise that would be most helpful to my condition). Many more people with an illness just like mine, or much worse, simply don’t have and can’t get the necessary financial support for proper care.

Lack of access to healthcare due to insurance company policies, and consequent financial barriers, is not only personally devastating to many people and their families. It is also another example of the stigma against mental illness. Physical illnesses are covered and “in network” providers abound. Mental illnesses receive very little coverage and “in network” providers are practically non-existent. This is bullshit and everyone who knows anyone with a mental illness, or has had their life touched by mental illness in any way, should be furious. And if you don’t think mental illness has played a part in your life yet, just wait: What happens when your parent, your sibling, your friend or your child is diagnosed with a mental illness? What will you do then?

Everyone needs to pay attention now; fight the stigma and fight for affordable mental health care now. If we don’t speak up, if we don’t take action, this problem is bound to get worse (supposing that’s even possible).

I am not sure exactly what we should do. I’ve started by writing this blog in hopes of convincing other people that mental illness is not some aberration or character flaw. It is not a failure of personal effort or lack of positive thinking. It is an illness, just like cancer, diabetes or arthritis. And it can affect anyone, any time, for reasons you would never suspect, like having a baby (or two). But I don’t think speaking (or writing) is enough. I’m sure there are organizations out their working for change, like NAMI. Maybe we can help them. Or, maybe you can just tell the person in your life that has a mental illness that, although you don’t understand what they are going through, you recognize that they are struggling and that they are brave. I think that would be a good place to start.

 

 

 

 

Everybody Panic

**Note to the Reader: I started writing this post a couple of weeks ago, while in the throes of a severe episode of anxiety. Ultimately, I found writing the post at the same time I was experiencing these symptoms too triggering, so I set it aside. I finished the post just recently.**

In the last 72 hours, I have felt more anxious, uneasy, fearful, on edge, [insert additional synonyms for anxious here] than I have felt in months, maybe even since I left treatment. We’re talking, “Hold please, I think I’m going to have a panic attack now . . . uh, okay, I guess not, that’s a relief. Let’s . . . wait, I think it’s really going to happen now; I just need a minute to sit down, maybe lie down actually . . . ,” kind of anxiety. Every single waking moment. I have been so eager to be alone in my bedroom the past three days, I have gone to bed directly after tucking in my four-year old.

I don’t know why this is happening. I mean, I know I have a mood disorder, so duh, I have crazy mood swings, but usually there is some sort of identifiable trigger — like it’s the weekend.

I remember when I used to love weekends. I would be so excited for that two-day break in my work-week to exercise, hang out with friends, go out to eat or see a movie. After our oldest was born, weekends become more complicated but my husband and I managed to maintain most of our prior activities, by taking turns with the baby or having one of my husband’s parents babysit. Sure we went out less but we still managed one or two dates a month, including dinner and a movie, if we could stay up that late.

Weekends are now the hardest part of my week. They involve two adults trying to keep three very mobile, loud and irrational toddlers from maiming themselves or each other, shattering eardrums or eating things that are not food. For me, it is the perfect storm of wanting to keep everyone safe and happy and nobody being safe or happy (at least not at the same time). While I constantly feel like I need to do something, I also feel like I can’t do anything right and that it’s going to be this way forever because we will always be outnumbered and the kids will only become more willful and unpredictable. Basically, I get super freaked out, am no fun at all and spend most of our family activity time wanting to run home and hide in my bedroom closet until Monday.

So weekends are a trigger. But the last three days have been a Wednesday, Thursday and Friday. These days are usually pretty low-stress for me (unless I have to go to the pediatrician’s office three times or find out my husband is flying to the Middle East for work next week). I have gone running each morning, to therapy and to visit a good friend. I have spent time outside in the warm weather, played with the twins in the backyard and taken them for walks. We went to baby swim lessons and watched the Muppets during lunch (yes, I am raising my kids to appreciate the classics). I even sat down and finally made a list of potential book projects.

But none of this self-care, socializing or meaningful activity has helped. I am jumpy, my heart races constantly and I am always too hot. My hands shake and I have trouble sitting still. I am impatient with everyone, including my children, so I find myself spending as much time alone as possible. I don’t want to eat. I don’t want to listen to anyone talk. I don’t want to talk to anyone. I don’t want to make any decisions. Every single thing feels like too much.

Living with this level of anxiety for the past three days has been particularly frustrating because I saw my psychiatrist a few weeks ago and we tweaked my meds to specifically address my anxiety symptoms. And I felt better. I really did. But now I do not. Definitely not. So I suppose it could be a meds thing, maybe we tweaked too much, or not enough. Medicating a mental illness involves a great deal of trial and error and, unfortunately, the errors affect your brain, which is a pretty big part of who you are and how well you function.

Another possible reason for this spike in my anxiety is that my mom and step-dad are here to help out while my husband is out of town. Last year, when I was still misdiagnosed and improperly medicated, I would often have my most severe panic attacks and most debilitating episodes of depression when my parents were in town. I was spending most of my days holding on for dear life, trying to manage work, a household of six and mothering three small children. My husband works a billion hours a week, so I was responsible for the lion’s share of household management and parenting-related stuff. But, when my parents showed up, there was suddenly, magically two additional people whom I trusted to do much of the work I was doing. And once that safety net was in place, I couldn’t help but let go.

It wasn’t that their visits made me more sick; the anxiety and depression had always been there, I just held them in as best I could because I had to take care of my family and perform well at my job. Once I felt my most important people, my children, were safe without me, I could stop trying to hold it all together and instead fall apart. My parents’ visits were like a safety valve for my sanity. So maybe having my parents here now, despite all the positive changes in my mental health, weekly schedule, self-care, etc., is triggering a relapse to the anxiety symptoms I had before; a sort of pavlovian relapse (because clearly I wasn’t enough of a science experiment already).

There is also the fact that their visit has completely thrown off my weekly structure. My brain, like all Bipolar brains, really, really benefits from structure, structured days, structured weeks; we just like knowing what’s going to happen next. But my parents really, really like helping, so they basically took over 90 percent or more of my regular, daily tasks. While this sounds lovely and was certainly done with the best intentions, it definitely threw me off my game. The tasks they were doing were part of my daily schedule and my contribution to the household. Suddenly, I had nothing to do and having nothing to do is a very bad thing when your mind is your enemy. I ended up spending far too much time in my mind, which, as Anne Lamott once quipped, “. . . is like a bad neighborhood, I try not to go there alone.”

Another possible factor is that my husband was away for almost a week. His absence can be hard and anxiety producing, especially in the evenings and at night. Being the only parent in the house, even when there are other adults present, feels like so much responsibility — sometimes more than I can bear. At night, every cry, every bump, every “mommy” makes me jump out of my skin, and the quiet feels even worse because I can only anticipate the next noise. It’s excruciating. When my husband is home, even if I am the one on night duty, I don’t experience any of this agitation or fear. Having another parent present makes me feel like I can screw up and someone of equal responsibility and love for our kids will be there to fix it. Also, our oldest child will freely harass me with bedtime-related requests for hours and won’t stop no matter what I say or do or refuse to do. But my husband shuts that kind of thing down like a boss. Particularly on days when my anxiety is really high, knowing I have a human hammer when it comes to bedtime is a huge relief. And after my husband got home, I did start feeling somewhat better.

I talked with my therapist the following week and we agreed that the lack of structure, or the significant, unanticipated change in my structure, was likely the biggest contributing factor to my anxiety attack. Although I’ve known for some time that I feel better with structure, I did not realize, until now, that lack of structure or a significant change in structure could be so devastating.

It seems I will need to create alternative structures or schedules for any visits, vacations, schools breaks, etc., of sufficient length to throw my brain into its unhappy place. In other words, my life is now, in large part, an administrative project. Fortunately, I enjoy making tables and spreadsheets more than the average bear. Peanut butter and jelly sandwiches are also nice.