The stigma of mental illness runs deep. While in recent years society has become more engaged in conversation about mental illness, the stigma remains — stigma I have lived with and hidden from for years.
With the premature birth of my daughter in 2012, I learned quickly how to be what others needed and expected, hiding deep within myself. With the addition of a not quite yet adopted son with extensive medical needs this past fall, I perfected my craft of illusion.
I am the perfect mother — a gift to two medically fragile children. At least that’s what doctors, nurses and family friends told me. But they don’t know the truth. For years, I ignored the mania, depression and post-traumatic stress, hiding it from those around me. For the past six months, I’ve ignored the importance of accepting and sharing who I am and what I need. I was, and still am, terrified of the stigma that comes with mental Illness. This is me finding acceptance and the strength to be more than what others need. This is my coming out, my destruction of the stigma surrounding mental illness. In December of 2014, I was diagnosed with bipolar 1 disorder.
I’m what some would consider a two-sided coin. When one side is up the other is inevitably down, except on those rare occasions where the coin lands perfectly on its edge, leaving both sides exposed for the world to see. One side is manic; the other side, depressed. One cannot exist without the other, but rarely do the two sides of the coin meet. Except, of course, for today. Today, the day that I share with the world I am bipolar.
In the medical world I am bipolar. In my world I am simply me. In the medical world I need treatment for my dual states. In my world both sides of the coin are necessary for survival, for truth, for clarity.
For those who can’t imagine what mental illness looks like, or who can’t see anything more than a stereotypical stark raving lunatic, hell bent on self-destruction, this is for you.
I am mental illness. Mental illness looks like me. The educated, intelligent, medical mommy whose days are marked with appointments and therapies. Bipolar I holds a master’s degree, has published a book, blogs and articles, all while living in the rush of mania. Bipolar I is overly empathetic, impulsive yet deliberate. She is covered in scars and tattoos, with a slowly healing heart the size of the universe. Bipolar I is a mother, a wife, a friend, a sister and a daughter. She has never been hospitalized but has been, and is, treated with mood-stabilizing antipsychotics like quetiapine, lurasidone and ertraline. She is a mess of beautiful chaos wrapped tightly beneath the paper-thin emotions she wears on her skin. Bipolar I is me, and I’m proud as hell of who I am, mental illness and all.
I am the face of mental illness, the living coin. I am not the stigma of my illness. I’m the writer trying to meld the two sides of the coin into one glorious person she can show the world, finally not caring who sees her.
Many years ago I moved to a new state. Again, I was in an area where I didn’t know any doctors or anything about the mental health system. This meant I bounced from psychiatrist to psychiatrist, and psychologist to psychologist, until I found one of each that worked well with me.
I had been referred to a “great” psychiatrist by my primary care doctor and was quite optimistic about finding someone who could figure out medication for me. I sat down in this man’s office and told him my background, to which he said, “You’re too difficult for me to treat. I don’t deal with people who have such severe bipolar disorder.”
Well, that was disappointing.
I have what is called rapid cycling bipolar II. Yes, there are quite a few variations of bipolar disorder, and one of the reasons I went undiagnosed for so long is because my type is not the typical (if there is a typical bipolar) DSM-IV definition of bipolar I which, simplified, is fluctuating manic and depressed states, each of which lasting for at least seven days. Then there’s bipolar II, which also has episodes of fluctuating mood, but the up moods don’t reach full mania. In both of these forms, you could be in a depressed or manic state for months at a time.
Rapid cycling means you go from mania to depression at least four times a year, but it can be as frequent as a few times a week, or even a few times a day. I cycle at least a few times a day on average. Apparently this type of bipolar is more severe (I think all forms of bipolar are severe though), which is why the new doctor would not treat me. He did send me to a bipolar specialist, who was a good psychiatrist and made the additional diagnosis of Attention Deficit/Hyperactivity Disorder, which explained a lot.
But I get a bit tired of not being a “normal” case of anything. For instance, I’m also extremely sensitive to medication so even a small dosage will give me an extreme result.
And I’m eternally frustrated. I’m frustrated that there’s little information for atypical cases of mental illness, yet among all the people I have met with mental illness, many of us don’t perfectly fit the definitions found in the DSM-IV manual.
What’s sad is that our doctors are also in a bind. Even if they know of alternative treatments for atypical cases, sometimes they don’t suggest them. Because states are lacking mental health funding, often atypical treatment — meaning anything from medicines intended for a different illness, to food allergies, exercise and diet changes — has not been throughly scientifically tested.
Because of this, we have to be our own advocates.
My advice for people who have “atypical” cases of any mental illness is to never give up and keep looking for more information. Keep detailed records of your moods each day, or each hour if need be. Document exercise, sleep, diet, vitamins. Document how your body and mind feel and don’t believe it when a doctor tells you, “That would never happen.” Even if it seems like your illness is too severe or too complicated, keep looking for a doctor who will treat like the individual you are. Have faith that you know yourself, and find a doctor who has faith in you as well.
This post originally appeared on Rev. Katie Norris’ website.
I remember the first “crazy pill” I ever took. I was on vacation in Tennessee, sitting on the edge of one of those generic motel beds with a hideous blanket covered with — what was it? Seashells?
Pill bottle in hand, my mother looked at me with apprehension and said what many folks would say to me for years to come:
“Are you sure about this?”
I nodded, looked her in the eye and without hesitation, and said, “Absolutely.”
In the years I’ve been taking psychotropic medications, never for a moment have I regretted my decision. Have I been afraid of what happens in the long term? Sure. Have I contemplated the impact of “big pharma” and my piece in that frightening puzzle? Definitely.
But for me, trying to survive each day trapped within agonizing depression was not an option. Attempting to end my life again was not an option. Continuing down the path that I was on? Not an option.
When I looked back at my life, I realized I had spent more time struggling than I had spent truly living. And I knew that if something didn’t change, bipolar disorder was going to kill me.
Everyone and their brother has an opinion on my decision to take medication for bipolar and anxiety. But have you tried meditation? What about acupuncture? Have you changed your diet? What about fish oil?
Initially, I entertained them. I explained that I had tried everything that I could, and that medications had been my last resort.
But, I realized I was under no obligation to justify my decision, especially to those who did not understand my struggle.
People who did not know what dissociation was, or what it feels like to be in the midst of a paranoid delusion; people who had never felt anxiety that stripped them of their ability to function in our society; people who had never felt emotional pain that seemed to throb from inside the marrow of their bones.
Complete strangers would badger me, presuming to know what was best for me without actually knowing the relentless, devastating pain mental illness had put me through. Strangers who thought they knew better than me, the person who had lived through this for years, what my body needed to heal.
Sometimes, it was well-intentioned. But most of the time, it was coming from a judgmental place.
They may as well have been saying, “I know nothing about mental illness, but I’m going to tell you about this random treatment I read about on the Internet because clearly you don’t know what you’re doing.”
And it made me so, so angry.
No, medications are not a “cop out.” They aren’t the “easy way out.” They aren’t a “quick fix” that magically make me happy and high and light. They aren’t easy. They aren’t quick and they definitely aren’t fun.
Taking medication for my illnesses was one of the most difficult decisions I’ve ever made, and it took incredible courage to make that choice. It was a process that took years — years of side effects, years of false hope, years of judgment, years of doubt — to finally get it right.
But eventually, with the right doctor and with a lot of patience, we did get it right. After four years of being the equivalent of a human guinea pig, my body responded at last and I could begin to do the important work of healing. Combined with therapy and self-care, I was able to begin again — this time, completely present and alive, no longer struggling just to keep my head above water.
And you know what? I’m not sorry. I’m not sorry for exercising my bodily autonomy. I’m not sorry for making the choice to take care of myself. I’m not sorry for taking control of my life.
Most of all, I’m not sorry for having the strength to choose life over death. Each day I swallow these pills, I’m reminded of the tenacity it took to keep myself alive, in spite of every fiery and relentless urge to end it all. I did what I needed to do to keep myself alive, and I’ll never apologize for the fact that I’m still here.
To be clear: Medicine isn’t right for everyone and it isn’t accessible for everyone, either. We need to do better not just for folks who take meds, but for those who do not or cannot. We need to protect a person’s right to dictate and choose what’s best for their body and advocate to make those resources available to them — no matter what they end up deciding.
Ultimately, this is not about medicating every single person with a mental illness. It’s about giving us the power to decide how to heal, be it with medication or otherwise, and defending our right to make that choice without pressure, without shame and without obstacles that prevent us from exercising those choices.
I am not ashamed of these pills. I am only ashamed to be part of a society that still believes it can dictate what’s right for my body and for my community.
Bipolar disorder is a challenging, life-long illness. The first year or two of learning to live with it can be devastating and all-consuming. When I was first diagnosed, 10 years ago at the age of 26, I had to resign from a career I excelled at to focus on getting well. It took an entire year for me to work with my doctors and therapist to find medicine and a treatment plan that worked for me. I was able to overcome severe depression and crippling anxiety, and even suicidal thoughts thanks to the vigilance and support of my husband and parents. Once I found stability and was able to maintain it for a year, my thoughts of starting our family began to take root.
Although I was able to taper off my medicine (under the close supervision of my psychiatrist), and had a normal, healthy pregnancy, we were not prepared for what would happen next. Not only was having our first child an incredible shock to my system (I had an emergency c-section after 17 hours of laboring – no pushing, but since the baby wasn’t tolerating contractions and I wasn’t dilating, my OB made the call for surgery), nothing could prepare me for how I’d react to motherhood. On top of all this, I had put enormous pressure on myself to breastfeed. I thought, from all the pregnancy literature I devoured before the baby arrived, that breastfeeding was the only acceptable means of feeding the baby.
I was wrong and learned the hard way.
Even though I knew lack of sleep was a trigger for me, I didn’t realize how little I’d be sleeping once the baby arrived, especially because I was trying to nurse. I barely slept at all in the hospital where the nurses checked my vitals every hour. Exhausted doesn’t even begin to describe how I felt. But I couldn’t take my eyes off our son. We had created a baby. I was in awe of this little person I was holding. It didn’t seem real. Although it could have been partly because I was headed into the throws of mania even before we left the hospital.
I’m certainly not perfect. Nor am I an obstetrician or psychiatrist. I’m just a regular mom who, after finding out she had bipolar disorder, wasn’t going to let it get in the way of her dreams of having a family. These are my reflections, looking back on my experiences of having my two children, now 6 and 4. This is what happened to me, and how I’d do things differently if I were to have a third child.
1. Have a plan for when you get the baby home.
With our first baby, I did everything and wouldn’t let anyone help. I was trying to succeed at breastfeeding and if someone gave the baby a bottle, he might not go back to nursing. Which meant I was always the one getting up in the middle of the night to feed and change the baby.
With our second, we had a plan. For the first two weeks, someone would be available to take the middle-of-the-night feedings. My parents stayed with us for a week, so they took turns during the first week home. Then my husband took over during weeks two to four. This allowed me to get a solid stretch of six to eight hours of sleep a night, critical to my recovery from the birth (a repeat c-section) and to prevent mania from creeping in. I learned to protect my sleep, and because of this, was able to stay mentally healthy once we brought our daughter home.
2. Don’t feel guilty for formula-feeding.
I breastfed our son for the first four weeks of his life, and then ended up in the psych ward for a week because of postpartum psychosis. Stopping breastfeeding was devastating, but on the way home from the psychiatric ward of the hospital, I realized being healthy for him was more important. Without my health I wouldn’t be present as a mother, no matter how I wanted to feed him.
For our daughter’s arrival, we planned ahead of time I wouldn’t breastfeed. Instead, I got excited about picking out bottles and supplies to formula-feed her, and my postpartum time with her was so much more enjoyable. Since I ended up taking antipsychotics and a mood stabilizer during the pregnancy, nursing was never an option, anyway. I accepted this reality.
3. When a medication works for your condition, weighing the benefits and risks is critical.
After experiencing postpartum psychosis after the birth of my first child, we were better prepared to navigate a second pregnancy successfully. Or so we thought. Going off my medicine for the first trimester was my mistake.
From my research, I knew there was a risk of heart defect during the first trimester of pregnancy with the medication I was taking. So I made a plan with my psychiatrist and the high-risk OB-GYN that I’d taper off the medicine when I found out I was pregnant, returning to it once I cleared the first trimester. Only I hadn’t weighed the benefits of staying on the medication against the risk I was taking.
Within a week of very little sleep I was manic and quickly falling into psychosis. Familiar with my manic symptoms before, my husband quickly took action and had me hospitalized. I was five weeks pregnant with our daughter.
When I returned home, medication was required to keep me stable. I went back to the high-risk OB-GYN for a post-hospitalization check-up and was scheduled for regular checkups and monitoring of the baby throughout the pregnancy. Luckily, she was born completely healthy and I had a wonderful postpartum period with no complications. I learned my risk for psychosis due to the lack of medication was far greater than the risk to my baby.
If you’re considering pregnancy or are currently pregnant, I urge you to work closely with your psychiatrist and OB-GYN to monitor and manage your bipolar symptoms. There are great resources available online to help you as you navigate pregnancy: Postpartum Progress, Postpartum Support International, and if you’re in the Washington, DC metro area (Virginia, Maryland and the District), the newly developed DMV-PMH Resource Guide maintains a comprehensive and current regional directory of specialized mental health providers, support groups, advocacy organizations and other relevant clinical resources pertaining to perinatal mental health.
There are resources available. Please don’t hesitate to ask for help. You can be a mom despite bipolar.
About 5.7 million adults in the U.S. live with bipolar disorder, but the illness is often misunderstood and rarely talked about. Like other mental illnesses, bipolar disorder faces a stigma that can make it difficult for people living with it to openly discuss it or access the resources they need.
The Mighty wanted to hear from people who live with bipolar disorder about what they wish others understood about the condition, so we reached out to the International Bipolar Foundation, a nonprofit that works to end the stigma surrounding the disorder and supports those living with it. The organization asked its readers to share one thing they wish others understood about bipolar disorder. Here is what they had to say.
1. “When I’m upset, it’s not always because of my bipolar. I can be upset about having a bad day at work, not having a good night’s sleep or anything reasonable. I’m a human, just like everyone else, and I try not to let bipolar run my life.” — Faith Amber Rios
8. “Everyone who has normal mood swings is not ‘a little bipolar.’” — Kaitlyn Wolff
9. “No matter how hard you work at keeping yourself balanced, you can still get thrown off.” — Kymberly M. Price
10. “Even if on the surface I look like I’m coping, it can take a huge amount of will, the cumulative effect of years of therapy and damn hard work to keep functioning and doing everyday things.” — Tracey Katz
11. “It’s a broad spectrum disorder. No one person with bipolar has the exact same symptoms as another.” — Amanda Stanford
12. “I hate when I tell someone I have bipolar and they get a look of terror in their eyes.” — Christine Kirton
13. “We are not bipolar disorder. We have bipolar disorder. And most of us lead fairly normal lives.” — Amber E. DeCorte
14. “The mood swings can come suddenly and without warning.” — Susan Foster
15. “When I’m down, it’s not a reflection of how others are treating me, it’s just the wiring in my brain. Sometimes I don’t know how to feel because the illness and the medications are difficult even for me to understand.” — Art Wartenbe
16. “Sometimes, I just want to be left alone. Other times, I need a puppy pile.” — Buffy Franklin
17. “People should not feel guilty because they cannot ‘fix’ it. Company and love are the best things they can give me.” — Joseph A. Golden
19. “I can’t help it. I can’t always just ‘calm down.’” — Rachael Lee
20. “You would never say, ‘Wow! This candy is so diabetic.’ So why would you use ‘bipolar’ as an adjective?” — Brandi Hall McBroom
21. “I’m a productive member of society. I’m not some crazy disease that needs to be locked away. I can do things just like everyone else. I’m strong and funny, and there isn’t anything more wrong with me than the next person.” — Alisha Roney
22. “Though it may not seem like it at times, I’m really doing the best I can.” — Mick Goodman
23. “Just because I’m unable to socialize or communicate with friends and family during my low points doesn’t mean I don’t love them.” — Sherry Danielle Fish
24. “[We’re not] crazy or insane. We are just people living with a condition.” — Emma Sinclair
25. “I can fully maintain my status as a good mother and take care of my children just as well and give them all the love and care they need. They’re what keep me going on my dark days!” — Debi Burr
26. “‘Bipolar’ is not a person. People ask how my bipolar is doing more often than how I’m doing.” — Viki Carter
27. “I hate not trusting my own thoughts or decisions because I’m afraid they’re results of my illness.” — Tiffany Bezayiff
28. “Being manic is not all fun and games. When I’m manic, I can be extremely paranoid, hard to understand (due to my fast speech) and anxious. I take risks I shouldn’t take. I’ll be broke during the duration of the episode (due to shopping sprees). I have no sense of empathy for those around me (since that would slow me down), and I’m restless constantly since I’m working on something all the time.” — Emmaleah Brooklynn Alkire
38. “When under the strain of bipolar’s strongest symptoms, we certainly can make selfish decisions, but that doesn’t make us selfish people. In fact, because we have struggled and known such depths of darkness, our compassion runs deeper.” — Lyss Trayers
39. “For many of us, mania is not an extreme elation or euphoria — it’s anger and irritability and impulsivity and recklessness. It’s a big loss of control of our grip on rationality and reality.” — Lyss Trayers
41. “I’m standing in the middle of a seesaw trying to stay perfectly balanced.” — Emily Anne
42. “I am still me no matter my mental health.” — Niki Mcbain
43. “I wish more people understood the physical toll managing this disease takes. It’s not just side effects from medications — it’s also the sheer exhaustion from adrenaline rushes, fatigue from depression, etc.” — Toni Jacobs Burke
If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.
The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.
As a woman who is married and still deciding whether or not I want to have children, the stigma toward pregnancy, motherhood and mental health is concerning. But until two years ago, these were just stories.
It was December, my birthday actually, and I had a consultation with a new psychiatrist. I’ve said it before: I’ve never met a psychiatrist I’ve liked. So while I didn’t go in with high hopes, I never thought this visit would be among the worst in my life.
As I sat in the waiting room, I knew who was waiting for me. It was undoubtedly going to be a man. (They’re always men.) He was going to have glasses. (They always have glasses). He was going to be slightly disheveled. (They’re always disheveled.) He was going to ask me questions about my history. I was going feel guilty and embarrassed. I’d then start to cry. He’d ask me why, and I’d incoherently try to explain myself through tears. It’d be awful, but then it’d be over.
When my name was finally called, I followed him into the office that now felt claustrophobic with the two of us inside. I quickly launched into the gory details of my illness.
Getting a psychiatric assessment is not like having a doctor glance at your mole. You’re sharing your most personal, and more often shameful, experiences of your life.
Imagine your most embarrassing moment. Maybe it was that time you farted during your sixth grade presentation, or when you walked around with your skirt tucked into your tights all day. Whatever it is, remember the fear of judgement, the embarrassment and the shame. Now, imagine retelling every mortifying moment to a stranger on the bus.
And this isn’t a passive audience. Your listener is asking questions: What did the fart smell like? What did you have for lunch that day? Have you ever farted in public before then? Does your family have a history of public farting?
These questions make you relive not only the embarrassing moment itself, but all of the moments leading up to it. Now you regret eating beans at lunch because you should’ve known better. Your family has always whispered about your Uncle Frank’s 1965 broccoli incident.
And as you’re answering, he takes notes. Endless notes. You try to peer over his clipboard to see what he’s scratching, but he holds it close to his chest. With those notes, he’ll make files – files you’re never privy to, even when you ask. (Trust me, I’ve asked.)
It’s like ripping off a Band-Aid – do it quickly and the pain lasts only a second.
When I’m done, we sit silently for a moment as I dig through my purse looking for a tissue. Just as I find an errant tissue, he inhales and asks, “Are you thinking of becoming pregnant?”
I pause, momentarily stunned by the question. I’d seen a lot of psychiatrists, but none of them had asked me this before. After a moment, I reply. “Not any time soon.”
“You know it’s dangerous to become pregnant while on these medications,” he replies, ignoring my response as he makes more notes on his clipboard.
“Yes, I know the risks involved.” My back is up, I’m feeling defensive. “But I’m not thinking of getting pregnant soon.”
“Good, because it’s dangerous and not just for you. We don’t know the risks of medication on the fetus. It could cause birth defects and other issues. It’s not 100 percent, but there’s still a risk. You need to know all of this before you become pregnant.”
“Yes, I’ve spoken to my doctor about it before. But since I’m not planning on getting pregnant any time soon, we figured we could revisit the issue when I’m making that decision. I don’t even know if I want kids anyway.”
He looks up at me, cocks his head to the side and adjusts his glasses before looking back down at his clipboard. “You know your disorder is genetic.”
I nod, feeling my cheeks flush. He interprets my silence as misunderstanding.
“That means that it’s passed down,” he speaks slowly, emphasizing every syllable, “through the family…”
“I know what genetic means,” I spit through my teeth.
I stare at him aghast, floored by the words coming out of his mouth. Apparently he thinks I’m some kind of monster who shouldn’t procreate! Would it be so terrible if I had a kid and they had bipolar disorder? While of course I wouldn’t wish my disease on anyone, my life isn’t horrible. And I imagine if my child did have a mental illness, I’d have the tools to help him or her cope.
I suddenly tried to imagine my life without children. Where once it seemed like a choice, it now seemed like something being forcibly taken away from me.
In that moment, and for the first time in my life, I desperately wanted children. I wanted a hoard of them. I wanted to raise them to be healthy and happy and then I wanted to thrust their beautiful cherub faces at him as proof. See they’re fine!I can be a mother!
I was so angry, hurt and completely shocked by his implications that I don’t even remember how the appointment ended. All I can remember is leaving the hospital with tears streaming down my face, thinking, It’s my birthday. He ruined my birthday.
It’s been two years since that appointment and I’ve shared this story repeatedly to illustrate the pervading stigma and fear existing toward those with a mental illness. My experience is nowhere near as traumatic as someone who was given a forced hysterectomy or abortion, but I tell this story to illustrate that medical professionals can be deeply uneducated when it comes to discussing mental health and parenthood. These comments came from a man who is supposedly educated in the field. This is a man treating a vulnerable population. This is a man who is using his authority to spread fear and misinformation.
Although my husband and I still haven’t decided if and/or when we’ll have children, the hurt and anger of this encounter lingers. Some days, when I see my friends with their babies, I think, “I could do that. I could be a mom one day.”
And then I hear his voice: But they could turn out like you…