What You Should Know About Living With a Mental Illness That's Here to Stay

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It’s OK, I thought. I’ve been here before.

It was while recovering from my second major episode of psychosis with mania that I realized I would be managing this illness for the rest of my life. The feelings that had accompanied the episode had been familiar this time. Looking in the mirror and not recognizing myself, the bizarre thoughts coming fast and wild, the keyed up, unboundless energy, the fear of sleep.

I approached my recovery with confidence. It had been five years since my last episode and I knew what worked for me last time would work again. I refused to be beaten by this illness.

Accepting that my condition is lifelong is difficult at times. Sometimes, I think other people in my life forget it is something I am facing every day. Yes, I am doing well. I am coping, today.

Here are a five things I wish other people understood that come along with living with bipolar every day, for the rest of my life:

1. I am always thinking about my illness because I have to.

Staying well takes commitment. I have to look after my health daily to stay well, and staying well for me is vital. If I’m not well, then I’m unwell. I have to get a good sleep, eat well, exercise, get fresh air, spend time for relaxation, meditate, engage with others, attend medical appointments and take my medication. I am scared to let any of these pillars of health slip because for me the risk is too great.

2. Taking medication sucks.

Keeping track of doses, prescriptions, side effects, blood level checks and not forgetting to take it is more than inconvenient. It hurts to think I’m dependent on those pills. I wish I didn’t have to put drugs in my body, and I can’t help but resent that it’s something I’ll probably have to do the rest of my life. However, it’s necessary, and for me it works. So I try not to complain.

3. I worry about what people think.

I am lucky I am surrounded by amazing people who understand and support me including my family, friends and colleagues. However, I worry about whether or not to disclose my illness to people who don’t know, as I am never really sure if they will understand. I wish I could be more open with people in my life.

4. It can be tiring.

If I say I need a day off, then I really mean it. Some days I just need to check out and recharge. Please, don’t think I’m lazy or making excuses.

5. I will never “get better.”

I have accepted this is part of my life. I need you to as well. Please, don’t put pressure on me to “get better” or think because I am well today that my illness has gone away. It is always going to be there for me. It is manageable. I am OK with it, but this is something I live with. I need you to be OK with it too and not wish I was different.

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The First Time I Apologized to Myself for All of the Self-Hate

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One of the traps easiest to fall into is associating the number on the scale with my self-worth. It can lead to a lot of negative feelings toward myself and a lot of hurting. The simplest sentences are often the hardest ones to listen to.

I am more than numbers can describe.

The numbers on the scale only represent how much gravity affects the house, which homes my true self.

I am enough.

Every day, there is a barrage of information telling us how we must look and how we must behave to be deemed beautiful. For someone with a mental illness, those messages come with strong undertones of, “You are never going to be enough the way you are no matter how hard you try.” Each calorie consumed, each offhanded comment about feeling a “little crazy” or about “bipolar weather” just hammers home that message.

Around the time I was diagnosed with bipolar disorder, I had a lot of habits which tore at my self-worth. I quit eating because I would never be beautiful with curves. I self-harmed because I would never be accepted as someone who was “overly emotional.” I was never happy with who I was because who I was was never good enough.

I remember the moment the words “bipolar disorder” slipped out of my psychiatrist’s mouth. It felt like a death sentence. It would no longer ever be an option for me to be accepted or feel beautiful. I couldn’t live with that.

I looked myself in the mirror recently and almost couldn’t recognize myself. Who I was on the inside didn’t match the outside. I sat down and cried once more, the weight of imperfection forcing me to examine all of my insecurities. I did something I’ve never done before: I apologized to myself.

It wasn’t that my outsides didn’t match the inside. It was that I didn’t match society. I guess I never have but that doesn’t mean I’m not good enough. It means I’m different. Different has never been synonymous with inferior. However, somewhere along the line, I convinced myself there was a divide between what would give me happiness and who I was.

I am enough. You are enough. Even when we don’t believe it for ourselves, it’s true.

Image via Thinkstock.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255
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The Moment I Opened Up to Someone About My Mom’s Bipolar Disorder for the First Time

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The first time I told someone my mom has bipolar disorder was my freshman year of college. I was sitting in a cafe on campus, bags under my eyes, hair in a disheveled bun, my clothes wrinkled and oversized from all the weight I had lost. From working part-time to going to school full-time to managing visits to inpatient care, the ER, courtrooms, police stations and therapists’ offices, I was more stressed than I had ever been in my 18 years of life.

I remember feeling tension in my chest to such an extent that even inhaling hurt. I never knew what anxiety felt like until my mom’s illness. For much of the first year of her diagnosis, my mom’s mental illness was our immediate family’s “not so little” secret. We began telling my mom’s sisters and best friend in increments. We knew we couldn’t hide it forever.

I had never told anyone about my mom on my own. My mom’s mental illness was something I carried on my shoulders. I was there to support my dad and to see my mom got the help she needed, but it was a quiet secret. It was like living a double-life, where I’d go to school and work as this seemingly happy girl and then go home to uncertainty and fear of what would happen next.

I remember the day I told the first friend of mine about my mom. I remember the words pouring out of my mouth like hot lava. I remember the fear of being judged or looked at differently. I remember the longing to not feel so alone in caring for a parent who was mentally ill. I remember the desire to be seen and known by a friend, to allow someone into the more secret corridors of my life, to not feel so alone.

The moment I opened up, I felt as if a balloon burst. All the pressure pent up in my chest immediately released. Luckily for me, the friend whom I first shared my “deep, dark secret” with met me with understanding, grace and a listening ear. I will never forget that moment or that friend.

It was because of her and her acceptance of not only my mom, but me, the daughter of someone with a mental illness, that I grew the strength and courage to be open about my mom’s story in college and long after. The more I shared my story and my mom’s story, the more I found people who either had a mental illness or knew someone with a mental illness. The more I shared, the less alone I felt.

My first college roommate shared with me about her stepbrother with schizophrenia and bipolar disorder. One of my oldest childhood friends told me her aunt has bipolar disorder. I had known her since we were 13 and didn’t find this out for another seven years into our friendship. The president of my sorority shared her story of having a mom with bipolar disorder. The list goes on and on.

It’s funny. So often we are afraid to be honest, to be candid, to be real. We fear sharing our struggles and our hurts out of fear of being judged or treated differently. The more I share my story and my mom’s, the more I see her story, our story, isn’t so rare. The more I share, the stronger I am and the more I heal from my own hurt. It’s a powerful thing: honesty, vulnerability, transparency.

Once, I sat in a support group for children and family members of people with mental illnesses. I was the youngest person there. Everyone in the group was likely my parents’ age or older. They were surprised someone so young would be at a support group, but even more so, I think they were surprised I was sharing such a hard story so openly.

I have come to terms with the fact that I will never know the, “Why?”

Why my mom? Why my family? These are questions I used to ask. Instead, what I now choose to ask myself is: What will I do with this? What will I do with the hand that has been dealt with me? I’ve decided not to let it eat me alive. I’ve decided to share with other people as a means of learning from their experience and perhaps to help them by sharing mine.

It isn’t easy. I have learned just because a picture isn’t perfect doesn’t mean it doesn’t still have beauty in it. My family is different. My story is different. My mom has a mental illness. I don’t have all the answers, but I know I am stronger because of what I’ve been through. I am more brave having learned the power in sharing my story.

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Treating Bipolar Disorder Doesn’t Mean You Won’t Have Bad Days, and That's OK

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There are times when I truly feel OK. In fact, I feel pretty darn good (but not good enough to sprout wings and fly). I feel stable. I feel relatively in control. I feel like I have plenty to live for. I don’t feel like a big liar when I tell someone, “Yes, I am OK.”

Since the depressive days are so painful and the manic days are so confusing, I am thankful for the “OK” days. That “OKness” is not solely due to meds, therapy or any one factor. A combination of forces work together to keep my symptoms at bay. Medications that work certainly help. So does therapy, adequate sleep, a positive attitude and relatively low stress levels, among other things.

When I’m struggling with the bad days, I’ve been asked how I cannot be OK when I take all those meds and have therapy every so often. It happens. Treatment does a lot to keep me stable, but it doesn’t work 100 percent all the time.

Sometimes my meds have side effects that interfere with my equilibrium. On those days, I’ve learned to be extra gentle with myself and not take on too much. If necessary, I schedule an extra therapy session and/or call my doctor. In other words, I am taking responsibility for my own well-being and acknowledge my limits. That is very much OK.

Just because I am being treated for the bipolar symptoms doesn’t mean I am not entitled to my bad days or even kind of cruddy days. I have them just like everyone else. I don’t have to beat myself up because I can’t be OK every day for the rest of my life. Some days, I am definitely not OK, and that’s OK.

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What the Hypomanic Phase Feels Like for Me

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This is what it feels like for me to be hypomanic. I word it that way because it affects every one differently, but this is my interpretation in the best way I know how to describe it.

It feels like I am in fast forward.

I feel like I finally have energy again, but it’s too intense.

I’m whizzing around at the gym, at work, on the road, like I can’t get somewhere fast enough, and it makes me impatient.

I can’t sit still, and I have butterfingers, dropping and tossing stuff, slamming doors and cabinets without even trying.

I’m distracted, and my thoughts are sporadic. I think about one thing and before I even finish that thought I am on to another one because that previous thought made me think of something else and it just cycles round and round with all these different thoughts that are completely irrelevant and pointless. (Notice the run-on sentence there?) Sometimes I dwell on silly stuff.

But it feels good. Except for the paranoia that other people are talking about me behind my back, or me thinking others can tell I’m different. I have to tell myself to “act normal,” like I did something wrong or suspicious and I don’t want to get caught.

Sounds are louder, lights are brighter, I can feel energy all around me. I feel like I can do anything!  Like right now, I am so inspired and motivated that I feel like I could write a book, or write songs and send them to famous artists who will applaud my work. I know these things may never happen, but my brain is telling me they can and will. I have grandiose ideas about my abilities and creativity.

I’ll probably come home and be super mom/wife. I’ll cook and clean and put the little one to bed and feel accomplished. It’s a nice comeback from not having the energy to even sit in a chair.

But there’s always a downside. I don’t need as much sleep so it’s hard for me to fall asleep at night. More thoughts about things that aren’t real, more racing thoughts that bounce from positive to negative and everywhere in between. The energy is great for the time being, but eventually it will catch up to me and I’ll slip into a breakdown again.

I’d really like to stay up all night getting stuff done. Cleaning, organizing, art stuff. If I didn’t have anything to do the next day I would do that and just sleep it off the day after. But I have to be smart enough to know when I need to go to bed.

I want to plan a party or get together. I want to redo my mom cave. There’s so much I want to get done that I don’t have the energy for when I’m stable or depressed. I wish I could take advantage of the time I have, but I can’t.

So, I’ll just sit here, bouncing my knees and chewing on my lips trying so hard to sit still as to not appear too hyper. I’ll just sit here and wait it out, like I always do.

This too, shall pass.

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How I'm Thriving With Bipolar Disorder

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“You need to lower your expectations for your life.”

By the time I first heard this, I had already graduated from law school, passed the bar exam, earned a master’s in public health and published my first book. I was 29 years old.

The woman encouraging me to expect less of myself was an outtake counselor charged with helping patients reintegrate into society. In my case, I had just spent roughly a week as an inpatient in a locked psychiatric unit where I had been diagnosed with the most severe form of bipolar disorder, formerly known as manic depression.

The counselor was not a psychiatrist or a psychologist or a licensed clinical social worker. Her office wall boasted a certificate that resembled something you’d encounter at a nail salon. I knew she wasn’t qualified to make any such assessment, and even if she were, I knew better than to believe her. I was raised to expect more of myself, even and especially when the world – whether because of my gender, nationality, skin color or any other such nonsense – expected less of me. Bipolar disorder fell squarely into the “any other such nonsense” category as yet another baseless reason people might think less of me. So my response to the suggestion I lower my expectations was firm and immediate: “Girl, raise yours!”

Since then, I have published a memoir about my experiences with bipolar illness and become an outspoken advocate for the rights of those living with psychiatric conditions. Along the way, I’ve met many others who share my diagnosis – some disabled by it, others not. Invariably, the key distinction between these two camps is acceptance.

While psychiatric disorders account for some of the leading causes of disability worldwide, with depression now topping the list, these conditions are not nearly as inherently disabling as the scorn and stigma surrounding them.

I know this from personal experience, but even more, I know it from the experiences of all the desperate mothers who have ever broken into tears while handing me a book to sign. They show up at every event, without fail, and their stories are all different, but also the same: grown children who will not accept their diagnoses, whose lives and families are being torn apart as a result, who fail to receive the treatment they need – not because they are stupid or stubborn, but because they fear the very real stigma that accompanies a label like bipolar.

Wednesday, March 30 marks World Bipolar Day, an initiative started in 2014 and aimed at challenging this stigma by changing global perceptions about what it means to have bipolar disorder. Spearheaded by the Asian Network of Bipolar Disorder, the International Bipolar Foundation and the International Society of Bipolar Disorders, World Bipolar Day falls on the birthday of Vincent van Gogh, who scholars suspect struggled with the illness.

While I tend to cringe at the concept of a day for everything (I’m looking at you, National Frozen Food Day), not to mention the idea of reliable posthumous psychiatric diagnosis, I understand the impulse here. People don’t like to talk about mental illness. For God’s sake, we still call it “mental illness,” as though the brain weren’t a fundamental part of the physical body. Given the prevalence of this colossal oversight, not to mention a grossly underfunded mental health system that relies heavily on condescension, coercion and incarceration, it’s hard not to support any day that might bring more attention to brain disorders.

But we need to do more than draw attention to the issue. We need to transform the way we view “mental illness,” not merely as a kind of clinical disorder, but also as an alternative – not necessarily inferior – way of thinking and being. I’m not saying these disorders aren’t serious or don’t require treatment. They are, and they do. Those of us living with bipolar disorder, for example, face a much higher risk for suicide than the general population.

Still, whatever the specific diagnosis, there remains something extraordinary – and yes, valuable – about a mind that works differently. For all the problems that may accompany a condition like bipolar disorder – and I assure you, there are many – there is also an upside. Just as we can experience certain extremes of mood and thought that others do not, we can also see certain solutions where others cannot.

My solution to dealing with the stigma surrounding bipolar disorder, for example, has come from the application of a hard-won skill earned from experience as a perpetual minority: an acute aptitude for adaptation. As an Iranian-American Muslim feminist living in the American South, stigma and prejudice are not new to me. I know from experience they are often the misplaced and unfounded result of others’ deep-seated insecurities, so I refuse to let them dictate how I live my life. More than any medication, it has been this mentality that has allowed me to thrive with bipolar disorder.

Having a psychiatric condition means you have an illness that requires treatment, nothing more. It doesn’t mean you are incapable or ought to lower your expectations for your life. Rather, it means you are uniquely capable and ought to raise the world’s expectations of you.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

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