Blog

SMI
  • Children, Resiliency and Mental Illness in the Family Unit

    I was away presenting at a nursing conference last week. I was discussing the provider as a patient in the context of both serious mental illness and the need to bring nursing practice back to the basics. If we, as providers, focused on the core of what we do as nurses, creating a consistent therapeutic milieu in interaction with both patients and colleagues alike, it will make it easier for colleagues to seek assistance when they need it. Essentially allowing the provider, the “hidden patient” if you will, to feel safe enough to be provider one day and patient the next. 

    I used my story as a case study named Carly interwoven throughout the presentation. At the conclusion we discussed her remission and I did choose to share that her story was actually that of my own. While I had hoped the question and answer session would be more of conversation regarding how we can focus on these “hidden patients”, I understand the audience seeking more history and questions regarding the case study presented. 

    The question I struggled with the most was how much support my kids had throughout the process and the impact my disorder had had on them. I answered truthfully in that they have received a tremendous amount of care and support from husband and were protected from my illness. I shared that they are incredibly resilient little guys. 

    The truth is there is a lot in what I also did not say. They are getting older. My husband and I won’t always be able to protect them. I live with so much guilt sometimes over having children to begin with. Which is ridiculous when you think about it, since my symptoms and diagnosis came following my final pregnancy. We were done having children at that point. No one had that kind of foresight and if they did, they failed to share it with us. I have guilt because of social media keyboard cowboys who from time to time have taken to telling me via this blog that people with bipolar disorder shouldn’t be parents. Fortunately they have not been as cruel to me as they have to other bloggers I know.  I have guilt because I am not always the type of mother I envisioned I would be when I first learned I would be having my oldest. I have guilt because I think I live in a perpetual state of role strain regarding the family unit. 

    My children will eventually start to ask questions about why I might be isolating. They might start to ask questions about why I am excessively irritable. They already fail to understand my noise sensitivity, which does affect them. Have you ever tried to explain to elementary school boys that they are too loud? Successfully getting them to lower volume is an Olympic feat.

    My oldest has already started to explore basic principles of neurobiology and mental illness to “better understand you, Mommy” as he puts it. He put together a PowerPoint presentation on this topic, presented to his second grade class in May 2016, which caught the attention of the International Bipolar Foundation. I didn’t discuss that in answering the question of the impact my disorder has had on the children. I didn’t discuss that because it makes me insanely proud and incredibly guilty all at the same time. It leaves one feeling conflicted. Is my child growing up too fast because of me?

    In the end, there is no right and there is no wrong. Parenting is a matter of feeling out what fits for each family whether mental illness is present or not. 

  • What does Size have to do with it?

    I was never the thin girl. I have been thinner or larger at various stages of my life. High School. College. Pregnancy. Post-pregnancy. Working girl. All a stage associated with a various size and a healthy dose of self-hatred to boot. I was the thin girl for approximately 8 months – so thin I was accused of an eating disorder – during my mania and initial recovery. A healthy dose of self-hatred still accompanied me everywhere I went. It turns out the thigh gap and the clothes do not make the girl. 

    What does though? I identify myself as a mother, wife, nurse practitioner, writer, and teacher. Size is not a factor in self-identity. It is everything I see however when I look in the mirror.

    I am presently at my largest size ever. Part of it was medication weight gain and part of it is self-medication with food. Eating increases dopamine in my brain and allows me to feel gooooooooooood. While I’m eating. When I am done, I am left feeling sad and miserable and full of shame. The transient increase in dopamine, a powerful neurotransmitter, creates a vicious cycle with my brain always seeking more. Unfortunately it is usually craving more Cadbury Mini Eggs and not tuna with avocado mayo. 

    I’m bringing this to attention since as of late I have been trying to highlight the risk of cardiovascular disease in those with mental illness. My annual physical is coming up and I have to admit: I am terrified. I had high triglycerides once before. I also reversed it with lifestyle change. I am not so optimistic this time. I am scared to my core my lipids will be high, my blood pressure will be high and that I will not be able to reverse what has begun. 

    I need to finally admit it. When I am happy, I eat. When I am sad, I eat. When I am bored, I eat. When I am tired, I eat. It is equally as destructive as my bipolar disorder at this point in the game. Turning 42 this year, there is not a “tomorrow, I’ll change” anymore. Tomorrow never comes presently. 

    Fit Bit, exercise, increasing activity, giving up dairy, eating paleo, food diary. Nothing is exciting enough to create lasting change or prevent me from getting bored. I stay sad and full of self-loathing. 

    Not looking for advice. Just being honest today. My shit is real.

  • Nevertheless, She Persisted

    From time to time, I struggle with writer’s block. I think to myself that I have nothing to say and that I have nothing to say in which people want to hear. I often view it as normal and part of the process of a writer/blogger. In the advent of a rare snow day resulting in the closure of my office, I anticipated spending the day writing and drinking tea. The reality is I spend the day binge-watching Empire and asking my husband what I should write about. He suggested politics. I laughed.

    Until I didn’t. This week, a quote making the rounds in the news has sat with me as I rolled its words and meaning around my head.

    “She was warned. She was given an explanation. Nevertheless, she persisted.” This was a statement Senate Majority Leader Mitch McConnell said in defense of his cutting off Senator Elizabeth Warren from remarks during a confirmation hearing for the position of Attorney General. Women all over have adopted this as a new rally cry in defiance of a new administration in Washington, which has been less than friendly to women’s rights. I digress however, as this is a blog about life with mental illness.

    “She was warned.”

    I was warned, sort of. I see this as more of the stinging rebuke once passed onto me by a therapist who chose to give up on me as a patient than take the time to assess if my diagnosis of postpartum depression needed to be revisited. I was deemed by the provider to still have the diagnosis, but that I was unruly, untethered, wild, and unable to be properly treated. And so, with the unruliness statement and the subsequent discharge from the practice I had my warning. I had the warning that I was too sick to manage, too sick to be treated and too sick for other providers to consider.

    “She was given an explanation.”

    In time, I was given an explanation. It took a second suicide attempt and hospitalization to get one. It was explained to my husband and I that I was bipolar. The diagnosis of postpartum depression, while once fitting, no longer applied. It was an explanation that I would need to hear over and over and over before I could really hear it. I would be hospitalized two more times before I would begin to understand what this explanation, what being diagnosed with bipolar disorder really means. This explanation still needs to be repeated to me from time to time as a refresher to best grasp the implications for my family and myself. I have an explanation no matter how many times I need to hear the words that I live with bipolar disorder.

    “Nevertheless, she persisted.”

    And how. This diagnosis, this challenge, has not kept me down. I persist due to my family. I persist due to the psychiatrist who thought “what the hell, I’ll take her on.” I persist due to my own bullish tenacity to prove others wrong. I persist to prove my old therapist wrong. I persist to prove any and all naysayers wrong. I can and did achieve a fragile state of remission. I persist to demonstrate to the attending psychiatrist during my last hospitalization that she was right. She told me I needed to get better and use my voice, my knowledge, my medical training for good rather than self-pity.

    Nevertheless, I Persist.

    And so can you.

  • Dear Former Therapist

    Dear Former Therapist, 

    When you told me I needed to leave your practice that day in 2012 because I was too surly, too out of control, I was too beyond your help, did you know how sick I was? When you left my family and myself without a safety net, could you understand the consequences your actions would later have?

    Would you realize how many therapists would turn me down, citing I was too acute to accept into their practice? Would you know once I found one willing to tackle the challenge of healing my mind, it would take over a month for me to actually be seen? Would you know that they too would find me so ill that they would demand I agree to a higher level of care first?

    Did you see the decline coming? Did you recognize what was happening, woven into the surliness you were refusing to work with? I wasn’t sleeping save a few hours with a cocktail of medications. I was drinking to self-medicate feelings away. I was a waif of a human being, frail, scared and unable to cope with sight of my own shadow. Did you understand what diagnostic clues the trail of self-destruction would lead to? Were you able to see through the muddy waters of all my symptoms and recognize I was misdiagnosed with post-partum depression?

    Could you have predicted that I would attempt to take my life on more than one occasion in the months that followed? Why did you not see, with your expertise that my diagnosis was so much more than depression? Why did you not recognize I needed a new treatment plan written for the mania I was experiencing, which we now know is bipolar 1 disorder.

    Do you understand how much anger I have held in the ensuing years since toward you? Do you understand how much pain could have been avoided with a proper diagnosis rather than a reluctance to do the work and see me – really see me – for the lost, sick individual I was?

    Today I write to not only ask you these questions, but also tell you I forgive you. I Forgive You.

    Your mistake, your failure to properly diagnose me has only made me stronger and more determined. Determined to never accept inadequate care again. Determined to always have my voice heard by my providers.

    Determined to ensure patients never feel they are alone in their journey. Determined to create partnerships with patients, for if the patient buys into their treatment, they are more likely to adhere to the plan over the long term. Determined to foster autonomy when feasible and recognize when it is not.

    I will not fit into the box you tried to place me in.

    Sincerely,

    Your Former Patient

  • Saying Goodbye to an Icon and Lessons Learned

    Everyone, and I do mean EVERYONE, has had an opinion or thought on the loss of Carrie Fisher suddenly last week to a heart attack. Myself included. However, before taking my thoughts public I needed time to process the loss, what it meant and what message was getting lost in the coverage.

    Carrie was an OG mental illness advocate. She spoke openly and frankly in a time that was unpopular to do so.  She wrote with right balance of passion, gravitas and humor regarding the subject. She talked about her disease, her addiction struggles and her experiences with ECT. She talked about her family relationships for better or for worse.

    “We have been given a challenging illness and there is no other option than to meet those challenges. Think of it as an opportunity to be heroic – not ‘I survived living in Mosul during an attack’ heroic, but an emotional survival. An opportunity to be a good example to others who might share our disorder. “ (November 2016)

    She was (and still is) everything I yearned to be, as I related to her story on so many levels. For starters, I once fancied myself Princess Leia as most little girls in the late seventies, early eighties did. However it runs much deeper than that. I saw pieces of my story run parallel to hers. The period in which we are unable to accept the illness, the drinking, the ECT. The courage to say, “hey, I’m having a relapse and shit happens”.

    When I found my feet, my voice, and gained confidence in both myself and my abilities, she spoke to me once more. “Stay afraid. But do it anyway. What’s important is the action. You don’t have to wait to be confident. Just do it and eventually the confidence will follow”. (April 2013)

    Her death stings me. It hurts more than the loss of Robin William’s laughter. Carrie was everything I wanted to be and now in death, everything I hope I’m not. She lived her life exactly the way I hope to live the remainder of my days. Her death, while it has called to attention the differences in heart disease between men and woman, has the ability to shed light on a greater issue: the decreased mortality of those with serious mental illness. 

    Mary Lou Sudders, the Massachusetts Secretary of Health recently remarked those with serious mental illness have a decrease in mortality of 25 years compared to their peers. If we expect to live until 85-90 years of age, then Carrie was right on schedule at age 60 according to that statistic. Countless studies published in journals highlight this issue along various themes. What all the data agrees on is cardiovascular risk is the highest and cardiovascular disease is the most common co-morbidity / cause of death.  Journals agree providers miss the mark in treating co-morbid illnesses in the mentally ill whether it is difficult to suss out a real versus somatic complaint, patient misinterpretation of symptoms, or bias against the patient for their psychiatric diagnosis to begin with.

    I am stung by Carrie’s death as it is too soon. It is my reality without vigilant care on my part. It is my reality unless I insist my PCP and my psychiatrist work as a team. It is my reality unless I change very stubborn habits. I have a lot to live for. And I intend to savor every year I have.

    Perhaps the best way to honor Carrie is talk about mental illness and medical co-morbidities.

    “I am mentally ill. I can say that. I am not ashamed of that. I survived that, I’m still surviving it, but bring it on”.   (December 2000).

     

  • My Bipolar Holiday Survival Guide

    OH, the holidays. A time of cheer, joy, festivity and goodwill. It is also a time of lights, noise, stress, pressure and emotional dysregulation. I know, it’s oh-so-shocking that one is unable to be jolly, however not everyone is able to sprint from Halloween to New Year’s with the enthusiasm (or even the faux enthusiasm) of a 6-year-old hopped up on candy canes and eggnog.

    Which gives us our start: not everyone is as merry and happy as you.

    The holidays are hard for some people. The holidays are hard for many, many reasons that do not even necessarily include mental illness. Be mindful of this fact when encountering fellow man that is not eagerly plotting his Elf on Shelf exploits or posting photos of their tree. A 2014 survey from NAMI found that 24% of those with a diagnosed mental illness find that the holidays exacerbate their illness up to 40%. One survey respondent who suffers with major depression shared that the holidays highlight all that is challenging about living with depression. 

    Not everyone has someone to celebrate with.

    While the world is off planning and attending holiday celebrations and talking with parents and siblings about the Christmas or Hanukkah menu, there are folks who are spending the holiday alone. Perhaps their anxiety doesn’t permit them to leave the house and enjoy the company of others. Perhaps they suffer from SMI and are in the hospital, on the streets, in jail or worse. Perhaps they are just isolated. There are sadly, far too many reasons why someone might be alone on the holiday. Have compassion. Extend an invite. Provide some companionship. If your schedule allows, volunteer.

    But I’m the one with a mental illness. I hate this time of year.

    Me too, sister. Me too. It was not always this way either. Repeat after me: I will do self-care.

    If I keep my own mental health in mind first and foremost and I can participate in the season. How?  Carving out a safe place for when the noise is too much. Last year, during peak squeals of delight and early morning Lego building, I snuck out to my local Starbucks who was open. The twenty minute round trip care ride with a piping hot chai latte was enough to recharge me for a few hours.

    I have to become more realistic about what I can and cannot do. For me, having small-ish children this can be challenging. However I cannot say yes to every single thing the kids and others want to do. I am happy that after two years, I have a break from the Polar Express train ride. Maybe next year, if the kids are still into it we can return. I avoid the mall at all costs and do Christmas shopping online. It saves me the stress and I don’t end up grabbing things off of Target end caps because “ooh! Look! Shiny! Pretty! On Sale!” 

    It is also important for one, including myself, to step back and think about what is the most valuable and treasured aspect of the holidays personally. Is it the meal? It is tradition? Is it volunteering? Focus on that, the one thing you can identify that does feed your soul during this time. Also the answer is personal and different for each of us. This question has no wrong answer.

    In the meantime, you will find me continuing my clean eating quest this month, avoiding the Salvation Army Santas with those darn bells and say Hi if you see me sneak out to Starbucks on Christmas morning.

    P.S. The most heartfelt thank you to those employees working on the holiday. You have no idea how much those few minutes mean to me.

  • Maintaining a Little Hope

    Next week is Thanksgiving and the official beginning of the hectic holiday season will begin. Since diagnosis, I have learned to live with a pit in my stomach and a hairball of anxiety in my throat from November to January as the trend is for me to have a setback during this season. It is simply stress and as much as I try to anticipate what needs to be done, my brain ends up defeated. I have been thinking a bit more about hope in the last few weeks as it pertains to me, to the season, to evolving moods and to 2017.

    Hope is all I have. Hope that medications continue to work. Hope that I can control my moods. Hope that my disorder remains in remission. Hope that I am a loving wife and mother. Hope that I am a patient and kind friend. Hope that I am a better, more effective provider. Hope that my patients keep hope for themselves.

    2016 has not been the best year for so many of us. I started off rough, with a deep depressive episode. Hope for symptom relief kept me moving forward and out of the hospital. Hope keeps me thinking the year will end differently than it began. I have advocated and spoken to so many congressmen and woman regarding the need for mental health reform. The hope of so many of us got HR2646 passed and we maintain hope that the Senate will soon act, continuing to push reform forward. Hope keeps me in action, showing the “world” exactly what I am capable of even if it’s not in the timeline I would prefer. 

    Four short years ago, I started spiraling down. Four short years ago, I could not recognize the symptoms nor understand that I had a problem. I could not understand I had bipolar disorder. I thought I had an ineffective therapist. Three short years ago, I believed my career was stagnant and over due to my diagnosis. I felt the knowledge of my disorder would preclude me from ever achieving anything further in this life and would ruin my family. Two short years ago I started writing. I started writing to change the way the public viewed mental illness, and in particular a nurse with a mental illness. I did it for myself, to hold onto the hope that my life was bigger than my diagnosis and would mean something to my husband, my children and me. One short year ago, I accepted a position that I never dreamed I would have. Hope always wins when you want it to.

    I suspect one has to be shown hope to have hope. I found hope when a psychiatrist believed in me and told me that during one of my hospitalizations. Prior to that moment I had truly believed I would be spending the remainder of my days in and out of the hospital. Recovering and relapsing repeatedly. I just may still. I cannot predict the future. However I have hope my new-ish pattern of stability and symptom remission will continue.

    What do I look forward to in 2017? I look forward to continuing this career I love. I look forward to working on my doctorate, provided acceptance to a program. I look forward to writing more. I look forward to presenting at a conference. I look forward to continued remission. I look forward to maintain hope.