Taking a brief break from the journey to atheism updates. We went to parent-teacher conferences this week, and I’m really pleased at how much Kidling has improved in his schooling since he moved to this new district and we started him on ADHD medication.
I’ve learned a lot about ADHD since I was diagnosed (never medicated) in 1998, and realized, looking back at my teens and childhood, how many disasters and near-disasters could have been averted in my life had I been properly diagnosed. I don’t really like to talk about my story often (though I may have written about pieces of it before), because I am afraid people will interpret it incorrectly and apply my unique circumstances and situation to their own lives.
I believe what happened to me is rare, and I strongly believe it is very damaging to not treat serious mental illnesses like bipolar or schizophrenia. I am concerned that if I discuss my story too much, someone who has been diagnosed with a serious mental illness will grasp at my situation as a reason why they could go off their medications and stop seeing their therapist and be fine, and I honestly don’t think (for most people) that is the case at all. At the same time, this whole misdiagnosis situation has played a huge role in my personality and how I respond to the world, and it’s been an ongoing source of internal struggle and confusion for me, which I often reference in my writings.
It all started in 1993. I was 13, and somewhat introverted. I had a hard time making friends, and I preferred reading and writing to social interaction. My mom saw how I preferred to isolate myself and stay away from others, and she concluded that I must be depressed. She took me to a therapist, who began to do, well, therapy. As therapists will. I quite enjoyed the sessions. Mom, however, felt therapy was not effective. She was of the medication-model of treatment, and quickly withdrew me from therapy to look for a doctor who would prescribe medication.
Over the next year and a half, I saw several therapists — 4 or 5, though I don’t recall their names. There was a sweet-faced woman with brown hair who had toys in her office, and pale red-headed man with eyebrows that made him look perpetually surprised. They were my favorites. I recall a severe woman, too, who my mom quite liked (she was pro-medication), but who I was frightened of. I often complained about the visits with her, so my mom found another therapist for me. One of these doctors diagnosed me with Cyclothymia
and put me on Zoloft.
Unbeknownst to me, my mom (who had Bipolar I
with atypical mood presentation
) was working on her psychiatrist to accept me as a patient. In 1995, when I was 15, he finally agreed. He later told me he had resisted so long because he did not normally treat teenagers. Of his entire practice history, I was one of a handful of teenage patients, and the first who came to him at such a young age. He diagnosed me with Bipolar II
and changed my medications to treat bipolar.
It was weird, though. I didn’t feel bipolar. They said bipolar people went into manias and made irrational decisions and spent a lot of money and ruined relationships — but even when I made so-called “irrational” decisions, I always knew why I made them, even if I couldn’t justify said actions. For example, when I was 15 I started smoking. I knew smoking was unhealthy, and I knew it was addictive. I just didn’t care. My friends smoked, and I was angry at my parents and the world because I had bipolar, and part of my lashing out was to start smoking. I can explain why I chose to start smoking, I just can’t justify that decision as a good, reasonable, or moral one.Mom and my doctors said bipolar people often couldn’t understand or explain their manic actions and behavior when they came down from the mania, but I could always explain the reasoning behind my actions. They said my manic episodes were different, less intense because I was bipolar II and hypomanic, and that’s why I didn’t experience the wild recklessness so typical of other bipolar people. They said this explained why my depressions were less intense, too. And my mom, grandmother, and aunt all had bipolar, so there was clearly a genetic basis for the conclusion.
I took a variety of medications. At some points, I took 11 – 17 different pills a day. I was on mood stabilizers and depressants for the bipolar, anti-psychotics for my “anger issues” that arose from the bipolar, and a couple of pills to deal with the side effects of my other medications, My medications changed every few months to years. My psychiatrist said that the human brain gets used to medications, it basically innoculates itself against them and they become less effective over time, which is why we were constantly switching the medication. I really, really hated taking medication. I would sometimes cry when I took my pills, imagining all the long years of my life stretching ahead of me, and taking these damned pills every single morning just to be considered “acceptable” by society.
Worse, I wasn’t even 100% sure the pills were necessary. Aside from the fact that I didn’t feel bipolar, I didn’t think my symptoms accurately aligned with the symptoms of bipolar. I suspected the medications were related to the mood swings. Sure, my mom and grandmother changed their medications — but it didn’t seem like they changed theirs nearly as often as I changed mine. On top of that, all my more bipolar-y symptoms seemed to show up after I went on medication. It sometimes felt to me like the medications were causing my bipolar symptoms; that the symptoms we were treating were actually the side effects of my medication. It was a crazy, discomfiting thought, and it made me nervous. I was a teenager, how could I possibly know better than my psychiatrist — a trained medical professional — and my mom, who had dealt with this illness most of her life?
But at the same time, I couldn’t shake this niggling suspicion that it was all just a huge misunderstanding. My mom’s bipolar diagnosis had changed her life, coming as it had after 14 years of marriage and 5 children. My dad once told me her diagnosis was completely unexpected, a bolt from the blue. My psychiatrist told me that bipolar is one of those illnesses that exists long before it presents. It’s there from birth. Some people have bipolar all their lives, but never present with symptoms or anything else. No-one ever knows, and it doesn’t matter. Some people live symptom-free, and then one day something happens and they begin exhibiting symptoms. Maybe they caught a virus or a cold. Maybe they underwent a traumatic experience that set the wheels in motion to loose bipolar. In my mom’s case, I believe it was pregnancy and postpartum depression. Dad said her pregnancies were difficult and she suffered postpartum depression after the birth of each of her children. She was diagnosed because of a particularly difficult struggle with postpartum depression after the birth of her last child. So, essentially, when I was 13, mom looked at me — a lonely, introverted, unpopular child with low self-esteem — and I think she saw her childhood self in me. She wanted to get ahead of the game, to get me treated and fixed before my life I went through what she had.
I do not blame my mom for what happened. Mom was acting on the knowledge and experiences she had, and she was trying to make the best decisions she could to help me with the information she possessed. It was quite logical she would immediately suspect mental illness, given our family history. I also do not blame the psychiatrist, who is a well-regarded professional and one of the best in his field. He is a brilliant, compassionate man who genuinely cared about my health and well-being. And to be fair, he was not used to treating teenagers, and he had every reason to interpret my psychiatric tests as bipolar, given that my family medical history and his conversations with my mom would have inclined him in that direction.
Everyone kept telling me I was depressed because I was quiet and didn’t like social groups and slept in, but I just felt like I was an introverted night owl. I didn’t feel
depressed, I just felt angry and irritated that everyone thought they knew how I felt and what I thought better than I did. Whenever I brought up my doubts, they all had answers and explanations that made sense.For instance, when I was 19 I was diagnosed with Rapid Cycling Disorder. I was taking lithium
at the time, and forgot to get my weekly blood draws
. I got the flu, and started fainting and throwing up everything I ate. I dragged myself to the doctor’s office and learned the lithium had reached toxic levels
in my system. After a week spent in the hospital hooked up to a variety of IV’s to deal with my extreme dehydration, the lithium poisoning, and some mineral deficiencies, I was shipped off to the psychiatric ward in order to get my medications re-adjusted. I was deemed “sensitive” to lithium, and told I should not take it in the future. While at the psych ward, my psychiatrist further modified my diagnosis, so I was now considered Bipolar II with Rapid Cycling Disorder
and concurrent ADHD. He told me they opted not to treat my ADHD because the stimulants used to treat it would cause a manic state.I was less concerned with the ADHD at the time than Rapid Cycling Disorder. It bothered me because it seemed like they were modifying my diagnosis to explain odd things about my presentation. For instance, my episodes had never been chartable or trackable, as bipolar manias and depressions should be. I also never seemed to get as horribly depressed as mom did. Sometimes I felt like I was acting
depressed because it was expected, and it got me out of church activities. I looked up RCD in the DMV, and learned that 4 or more episodes a year qualify one as having RCD. More than an episode a month (let alone a week, or daily) is unusual. It also indicated those with RCD were more likely to be mostly depressed, with rare highlights of elevated mood, which was another way I thought I differed from the norm. Although people kept telling me I was depressed, I mostly felt neutral/ fine and a little sleepy (because I stayed up late).
In 2001, mom descended into a horrifically deep, terrifying depression. She just checked out of the world. Nothing helped, no medications or other treatments. Soon after, I had my own struggles with postpartum depression, and just as I was coming out of that, my mom died. I went into this self-destructive spiral of grief. Some months after my mom died, I went through a period where I would stop/ start my medication. I was seriously questioning my diagnosis, and I thought if I went off my meds, that would answer the question once and for all — if I went through a manic or depressive episode off medication, it would resolve all my doubts. But I couldn’t do it. I would stop taking them for a few weeks, and within 2 months I’d be terrified and jittery, paranoid and suicidal. I was also terrified of ending up in an untreatable, near-catatonic depression like my mom. The risk did not seem worth the rewards, and the immediate emotional effects of going off my medication were so devastating, they seemed to reinforce the diagnosis.
In 2006, I began seeing a new psychiatrist — actually, an ARNP. She re-diagnosed me (although she didn’t tell me until 2008) with Bipolar I. Her exact diagnosis was bipolar I with atypical mixed-state presentation and rapid cycling disorder, concurrent ADHD. In laymans terms, that means that I had bipolar I, but I didn’t present with “typical” bipolar. Specifically, I didn’t present with regular manic and depressive states, and when I did present a manic or depressive state it had “mixed qualities”; ie, symptoms from both states — as in, instead of presenting as depressed, I would present with the tired exhaustion of depression mixed with the wild, agitated irritation of a manic state. Furthermore, my moods weren’t chartable, and I had more frequent episodes than other bipolars. In other words: I had moods that contained elements of both happy and sad. My moods were not easily chartable as distinct episodes. My “episodes” (moods of happy and sad) could happen several times in the course of a day.Now, I don’t mean to sound cynical, but isn’t that just . . . normal? Isn’t that how people are? Where you can be happy in a day, and a little later feel kind of cruddy and down? And isn’t it normal for people to feel maybe happy and stressed at the same time? Or sad and laughing at the same time, like when you’re at a funeral and your Uncle Mort or little niece says something unintentionally hilarious? I mean, as far as I can tell — and mind you, I recognize that since I’ve been told my entire life that my experiences are not normal, I don’t really understand what “normal” is — this is normal. It’s normal to have mild ups and downs throughout the day and have grey-areas in moods.
When I finally learned my new diagnosis, all I could think was, “I’ve been diagnosed as bipolar, and my file keeps getting passed on to people who didn’t even know me when I was 15, and now we’re all just believing some decade-old files and twisting every piece of medical jargon available to explain why I don’t have the symptoms of my diagnosis.“
It took me another year to gather up my guts to do it. John and I were going through a hard time with the house and some other stuff. We had made a dumb choice in October 2009, and decided out of sheer stubbornness and an unwillingness to cry chicken to pursue it. It was a series of really bad decisions and mis-communications on both our parts. We were both really angry at the situation and continuing to pursue it because we each thought the other partner wanted it. It was a tragi-comedy of errors. Anyway, I decided to go off my meds while we were in the midst of all that. My plan was to slowly go off, ratcheting down my dosage on a weekly basis. I managed that for about two weeks. Then on March 3, 2010, I tried to overdose and failed. Lots of hard liquor plus lots of depressants just makes me throw up a lot. Over the next few weeks, I kept trying to finish the job. John ended up taking time off work just to keep an eye on me. He should have put me in the psychiatric ward, but it was just too expensive and we couldn’t think of anyone we could turn to for financial help. So instead, he took time off work and watched over me while I detoxed.I still shudder when I think of those months. It took about 3 months for the medications to fully leave my system, and they were among some of the worst months in my life. I had trouble sleeping. I struggled with auditory, visual, and tactile hallucinations. I swung between extreme paranoia and extreme self-loathing. I became convinced John wanted to divorce me and find a new partner. I believed my mom killed herself because of me. I believed I was a bad mother who should be separated from Kidling. I would beg John to let me kill myself for the good of the family. I explained to him over and over that if I was dead, everything would be better for him and Kidling. His family relationships would improve, he could marry someone who was worthy of his affection, and Kidling wouldn’t have to grow up with a mentally ill mom. I kept saying he could finally be happy. John would sit there, staring straight ahead, with tears in his eyes. His arms would be folded tight, and he just kept shaking his head, his jaw locked tight, and saying I didn’t understand anything.
Then, one morning in late May or early June, I woke up and it was like a dark fog had peeled back. I could see the world so clearly, and it was bright and beautiful and normal. I knew with a peaceful, pervasive sense of calmness that the medications were completely out of my system. I felt so fragile, as though I were Persephone, returned from a cold winter in Hades to find the world born anew in spring. I was almost afraid to speak, to break the spell of peace.
As beautiful as it was to finally be emotionally and mentally steady, I was also horrified to look back on the past few months. My anger, my self-loathing, my suicide attempts — after everything John and I had been through together, I was so afraid I had finally managed to tank our marriage. I had spent 3 months trying to kill myself; trying to convince John his life would be better for my death. There’s no way around it: That is some fucked up shit, and I put John through the emotional wringer while our marriage was already under strain from the previously referred to situation.
Luckily for me, John is an amazing, compassionate, and loving man. It’s why I fell in love with him. He was well aware that detoxing from an addictive, mood-altering substance like psychiatric medications — even with their FDA approval and legal prescription status — was like any drug withdrawal, and that I was not myself. Plus, we’ve worked through some pretty damn serious issues before. It’s gotten to the point that we now joke that we’ve weathered several
of the types of issues that are said to tear apart other marriages — the death of a parent, natural disaster, home renovation, in-law disagreements, marital separation, and on-going health issues. Now we added drug detoxification to that list.We ended the other situation causing us stress and focused on our marriage instead. I returned to therapy sans
medication, to keep an eye on any potentially serious mood fluctuations. It’s been two years since I went off my medications. In that time, I haven’t had any manic or depressive states. I thought I had SAD
, but after my doctor ran a physical I realized it was just a Vitamin D deficiency, so I started taking a supplement. Since going off my bipolar meds, I’ve noticed some of my ADHD symptoms, such as social awkwardness and a sort of laser focus on topics that interest me, have become more pronounced. I suspect the bipolar medications may have accidentally treated certain aspects of the ADHD.
So that’s the whole story: I was misdiagnosed, and it took years until I was finally able to follow my gut instinct, go against medical advice, and address the situation. Part of the problem was that whenever I started to go off medications, I assumed it would only take a week for my body to detox from them. I later learned, long after my detox in the spring of 2010, that it can take up to 6 weeks for all the medication to fully flush from the system. Part of the reason I had continued to believe I was bipolar was because every time I’d previously gone off meds, I would run into the first emotional problems related to suddenly going off a plethora of psychiatric drugs, and assume the mood problems were due to mental illness, not the fact that I was withdrawing from psychiatric drugs. The spring of 2010 was the first time I actually fully withdrew from my medications.
I don’t like to talk about this because I spent half my life thinking I had bipolar and shaping much of my self-identity and perception around this diagnosis. Now I find myself adrift. I’m glad, obviously, that I’m not bipolar. I’m uncertain how to explain this to my close friends and family without sounding like your typical anti-mental-illness person in denial. It was a long, difficult journey, and I was continually second-guessing myself. I don’t want to align myself, even accidentally, with the type of idiots who perpetuate stigma against mental illness by saying shit like:
- “You just need to pray harder, and god will cure you.”
- “It’s a punishment for sin; if you repent you will be cured.”
- “It’s the pharamceutical companies pushing their wares; there’s no such thing as mental illness.”
- “You just think too negatively. If you started exercising and eating right and thinking positive, you would be fine.”
- “What you need to do is go on a [vegetarian/ fruitarian/ vegan/ Atkins/ South Beach] diet, and your body will cleanse itself.”
- “Have you ever tried [acupuncture/ yoga/ mood stones/ etc.]? You probably just need to center yourself.”
- “Ooooh, medicine is bad for you. You should just take St. John’s Wort. It’s a natural remedy.”
There is a strong tendency in our society to believe that mentally ill people are emotionally weak, or seeking attention, or faking it. That they are sinners, less worthy, less worthwhile. Of course, when people say stuff like this to me, they aren’t just talking about me. They’re talking about all mentally ill people. Although people who discount the reality of mental illness probably don’t think of it this way, they’re calling my best friend weak, because she killed herself even though she stopped taking medications and went on natural, cleansing diets and exercised a lot. They’re saying my mom was a sinner being punished by the god she loved so much. People who told me, in so many words, that mental illness is a character flaw were talking about every mentally ill person I had ever known, loved, and respected. They were explaining the genesis, without realizing it, the self-loathing and self-destructiveness I had witnessed in mentally ill people who refused or stopped treatment. They were saying people with mental illness were weak, deluded, sinful, stupid, and deceived.
I hate that. I hate the stigma against mental illness; I hate the tendency to assume that mentally ill people are somehow broken and less worthy. I hate it when I hear people say that all mentally ill people need to do is make some lifestyle change and voila! Cured! No more medications, no more evil doctors, no more silly mood swings. I hated that by questioning my own diagnosis, I was putting myself in a position that would allow people to group me with those anti-mental illness people. I hated that I was putting myself in the awkward position of having people tell me they “knew all along” that healthy living would cure me where the medical establishment wouldn’t. I hated it because I knew they were wrong, I knew I was the exception, not the rule. And I also knew that, given human nature, they would assume I was the rule — not the exception.