It’s been a year since I’ve been diagnosed with bipolar disorder. The past year, through my hard times, my recovery and my new found strength, some people have struggled to understand me and what I’m going through. This is me trying. This is me telling you what I wish you understood about my mental illness.
1. Bipolar disorder is not something I’ve made up.
I didn’t not make up bipolar disorder to excuse my bad decisions. Bipolar disorder has a medical definition, and it’s very real.
2. It’s not fun when I’m manic.
I’m a young adult who takes pride in being able to get good grades, run a business and pay my bills. There’s nothing more frustrating than coming out of a manic episode to find my credit card has several hundred charges to it, or that I missed some major deadlines for school.
3. I’m not giving up.
I want you to know no matter how far I fall, I’ll always climb back up. I’m determined to live a successful life. I won’t give up, so please, don’t give up on me.
4. When I forget things I’m not just being neglectful.
When I say I can’t remember something, it’s not me being neglectful or choosing not to remember. Sometimes things are harder to remember. I don’t know why, but believe me, it’s not by choice.
5. When I cry, I’m not looking for attention.
I’m not even looking for sympathy. I cry because I’m tired of fighting with myself. I cry to release the stress, anger and frustration I carry within. I cry because I know when I’m done, I’ll get back up and keep pushing through.
6. I’m sincerely sorry when I snap at you.
It’s not on purpose and it isn’t a choice. I wish I could control my outbursts, but when I’m in a bad place I lose control of those things. Know I will come back to you to apologize every single time.
7. There are days when the stress of life is just too much.
This doesn’t make me weak. Please understand my disorder makes dealing with stress much more difficult. I might need help with things you feel are simple.
8. I’m trying.
You might not see it on the days it’s 4 in the afternoon and I’m still in my pajamas, but if I’m out of bed and being semi-productive, I’ve won a huge inward battle.
9. I still look for your approval.
Despite my disorder, I’m constantly trying to be the girl you once knew.
10. I will always love you.
Even if you don’t understand my disorder, what I’m going through or why I am the way I am, I will always love you. You have been there for me since the day I was born, and I cannot imagine how my life would be without you.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
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.
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.