little boy looking in a funhouse mirror

Sometimes, my son experiences tremors or other side effects from his medications. These can be debilitating to the point where he needs to come home and rest. Then, I’ll often hear the comment, “Well, it’s hard to tell which medication caused it. He takes so many medications.”

This comment is not usually made with a sympathetic tone of voice. My husband dismisses it as “just an observation.”

But to my ears, and from the tone, it sounds judgmental. And of course, as one of his parents, I feel judged.

My son was diagnosed with a mood disorder at 9 and bipolar disorder at 10. He is now 17 years old.

We’ve been through dozens of medications. I say “we” because in our house, medication changes are a family effort. Everyone works together to help because it’s never easy.

He currently takes five different medicines for his illness. He takes a lower dose of each one than is generally prescribed because he cannot tolerate higher doses of any of them.

I know this sounds like a lot; and it is. But each of these pharmaceuticals has a role in balancing his mood and helping him live as normal a life as possible.

If we stopped giving him even one of these, he would be tearful and depressed all day, or his thoughts would be racing so fast that he couldn’t function. He definitely wouldn’t make it to school.

There was a distinct reason we added each one. My son was going through a great deal of crisis and pain. His brain was, as he says, “mixed up.”

Then, each time he had to decide which side effects he could put up with because all of these psychotropic drugs have a host of those. It’s a balancing act of side effects and benefits. If life is more tolerable for him, the medication is worthwhile.

He constantly needs adjustments as he grows and his body and brain change.

Some of the staggering side effects listed for these drugs include: vomiting, fast heartbeat, high blood pressure, trouble breathing, loss of memory, suicidal thoughts, tremor, hair loss, changes in vision, dizziness.

Other side effects are: liver dysfunction, changes in blood cells and platelets, confusion, coma. These are the ones I wake my son up in the middle of the night to check for, poking him to make sure he responds.

Everyone’s body reacts to these medicines in a different way, so what works wonders for one may throw another into a horrible cycle and make the current symptoms even worse.

Then, there are the results. The process is similar to playing Russian Roulette. For him, sometimes it goes this way: “There is no god because if there was, he wouldn’t let me feel like this. No god would ever do this to someone.” These are signals to stop that medication immediately and go back to square one. We know that one isn’t a keeper.

Or sometimes the new medication provides a much-needed adjustment. Wow, he’s not as depressed. He’s happy. He sang in the shower. He relaxed and took a bath. He did some homework.

Things we thought would never get better. The reason we took that big risk.

Then, the lift in my own mood occurs. That heavy load feels so much lighter. My husband and I can go out and leave him at home. He wants to go places with us. We sleep at night. Our house is a happy place to be.

Therefore, when someone comments that he takes so many medications….

Please don’t tell me something I already know. I’m not sure if you understand why he’s on all these medications. I know how hard it is for anyone who hasn’t experienced it to even comprehend.

You couldn’t know we tried half a dozen antipsychotics before we found the right one for him. That meant a trial of at least a couple weeks for each and a host of side effects to deal with before throwing in the towel.

You couldn’t even imagine the blood, sweat, and tears my son experienced with each medication change or his pain that led up to it. You couldn’t know how my husband and I agonized every time or the heart-wrenching decisions we have to make because our son has a mental illness. You couldn’t know the sleepless nights, the turmoil in our house, or the long nightly car rides to help him calm down so he can sleep.

You wouldn’t know what we watch him go through.

Then, there is the feeling of elation when a medication actually works, when we see him feel better.

That is why we will never give up on trying to help him and to make things better. Medication, therapy, all the tools he needs.

I hope after reading this, you can understand a little bit more about what he’s had to endure with the addition of each of these “many” medications. I hope you understand that he, and his family, never really chose to add any of these at all. It wasn’t a decision; it was a necessity due to his illness.

You probably would be less likely to comment about the number of medications someone with a less stigmatized illness takes, so please don’t make a remark about the number of medications he takes for his brain illness.

I also hope you understand what a strong and incredible person he is for carrying this load every single day.

Editor’s note: This story has been published with permission from the author’s son.

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A couple of days after I bought new paint for my room, I kicked a hole right in the wall. I created what seemed to be a black hole in the purple (the color I picked out in seventh grade) wall next to my bed and the heel of my foot was covered in dusty white. I shook it off into the covers in my writhing and screamed and screamed for what felt like hours. I was so full of rage, it felt like my body was pulsing. It felt almost electric, a feeling I would later find out was the result of withdrawal from my medication, an SNRI my new psychiatrist had given me without a proper diagnosis.

It had been three months since I came home from my sophomore year of college in Chicago to my Midwestern town, two hours below. I had been in such a heavy, depressive state, my mind felt like cement and my body like a corpse. It was rare for me to ask for help, but I was doing it and when I got home I was lucky enough to have an appointment with a psychiatrist who immediately gave me a new prescription, after about four years on an SSRI. I always thought I had chronic depression and that my original medication was helping. But what I found out later was the seemingly “great times” were a medication-induced mania. I would write and edit for six newsletters, blogs and magazines at a time, work four different jobs and be with a different boy every day or night. I felt unstoppable. Finally, I was stopped and I asked for the help to get me going again.

I picked out a new white color for my room and I held the weight of the paint can with a feeling of hope and responsibility. I would cover the old paint, though it would take several coats and my room would be clean and new. Buying the paint was the first thing I did after being released from a mental care facility in town. It felt nice to know the psychiatrist and social workers there felt good enough to let me go.

Before I was sent to the mental care facility, I was in the emergency room because I was terrified I would kill myself. This feeling had never felt more prominent than it did that night, when I couldn’t help picturing killing myself to take me out of the body that felt like a vessel helplessly controlled by a malevolent brain. I told my boyfriend, who told my mom, who took me to the hospital. From there, I was sent to respite care, respite simply meaning “rest,” where I would meet with a psychiatrist every day at 7:30 a.m. It was there I truly realized asking for help saved my life.

At respite, I was finally diagnosed with bipolar II, after speculations from my therapist I had been seeing since high school. There, they quickly weaned me off the second medication and prescribed me with an high amount of two different drugs meant for bipolar disorder. I felt fantastic. It helped me sleep, but not too much and I even felt good enough to work on a paper. Soon after, they let me go home.

A couple days later, the withdrawal symptoms reared their ugly heads. I sweat through all of my clothes, felt on the verge of vomiting constantly and was so dizzy I couldn’t stand up to eat or go to the bathroom. I had a feeling of electricity in my hands, feet, ears and eyes. I couldn’t look at a computer or read a book. I was bedridden, staring at my purple walls and popcorn ceiling. I knew it was the medication. I immediately stopped the new medication and swore off the previous medication for the rest of my life. It felt as though my brain was full of pills like pretty toppings, mixed at an old ice cream shop and then scooped out and sold. I was so physically ill. It was here I asked for help again.

I was admitted to the hospital for my physical symptoms and stayed here for a few days. I was given a new medication. The storm of medications had me stuck. It was as if I kept reliving the worst day of my life over and over again, an odd sort of groundhog day. I thought going home from school was the worst day of my life. I thought my depressed days in bed and sweaty pajamas were the worst days of my life. I thought the day I almost killed myself was the worst day of my life. I thought the day I kicked the hole in my wall was the worst day of my life.

But the importance of these days was each time, I knew to ask for help. And the help was given to me. Since then, I’ve learned to view my life in relative terms. Yes, today might feel terrible and endless, but at least I’m not stuck in bed. Yes, today I may have reverted to some old habits, but at least I no longer feel the effects of the wrong medication. Yes, today I may have cried three times, but at least I am back at school. Yes, today may suck, but at least I fixed the damn hole in the wall and painted over the purple of the past.

Editor’s note: Please see a doctor before starting or stopping a medication.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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“Hannah, I know you aren’t going to want to hear this. But given your symptoms, I’m almost positive you have bipolar 2.”

I sat there, looking at the doctor, dumbfounded. No, no, that doesn’t seem right. No way. My mind was spinning, trying desperately to comprehend her words. In that moment, nothing seemed to make any sense.

I sought out psychiatric help not long after coming to college. In high school, I had battled depression, generalized anxiety, panic attacks, and restrictive eating. I knew these challenges wouldn’t suddenly disappear as soon as I came to my university, although I certainly prayed and hoped they would. When things got a little messy toward the end of my first quarter, I decided it was probably time to go back to receiving professional care.

I started going to therapy and began taking stronger medication for my anxiety, but something was just a little out of sorts. Over winter break, my anxiety started to rage for days on end. With it came irritability, racing thoughts, little desire to sleep, a surprising amount of productivity, and seemingly boundless energy. I was still anxious, sure, but I wasn’t really in a bad mood. In fact, I felt pretty good about myself, even as I experienced a certain edginess. My doctor would later describe this phenomenon as “hypomania.” In retrospect, this probably wasn’t the first time I’d experienced such a mood swing.

About a week after I returned to school, I felt like I hit a wall. The anxiety, the neuroticism, the productivity was all gone. I was exhausted. I developed severe headaches and found it challenging to do anything but sleep. For about a week, I felt engulfed in a fog, as if life was moving way faster than I was. I certainly recognized it as depression – this kind of situation had happened more than once before. Still, as a new quarter began and my responsibilities grew, I struggled to figure out what was up.

The next week, I went in to the campus health center and got my diagnosis. It was one I never thought I would receive. Bipolar. You have bipolar disorder. At the moment, it didn’t make any sense. I was a normal student. I was taking 16 academic credits, had earned a prestigious internship, and was in a leadership position in my sorority. I had been dealing with my mental health issues, sure, but there was no way I could have expected something like this. I stared blankly at the physician with tears streaming down my face. She offered very little in the way of comforting words or detailed explanations. Instead, she sent me home with an enormous pile of paperwork, a new prescription for mood stabilizers, and a lump in my throat unlike any other.

For the rest of the week, I tried to put the pieces together. I knew what I had experienced over the holidays was more than just anxiety because it wasn’t all so bad. Depression was more typical for me, so it was much easier to identify those symptoms. Still, I struggled for days to come to terms with this new label.

My roommate was the one who helped me to understand the importance of self-acceptance. “Think of it this way,” she told me. “If this ‘label’ is what helps you receive treatment and ultimately feel better, isn’t that a good thing? I know it’s hard and I know it’s scary, but maybe this is what you need to get well.”

Her words really helped put things into perspective for me. She was right: a changed diagnosis is sometimes a positive because it helps point towards a potentially more effective treatment regimen. It took me days to really understand what she meant, but I think she had an excellent point.

Don’t get me wrong, there is still a lot I am trying to understand about bipolar disorder and what it means for me, if my diagnosis is indeed accurate. But today I feel much more at ease, knowing whatever my “label” is, it doesn’t have to have a negative connotation. More importantly, it doesn’t have to define me. My identity lies in my humanity, not in whatever disease I may have.

I am not bipolar. I am not anxiety, nor am I depression. I am not a sleepless night, nor a restless mind. I am not a bad day, a bad week, a bad month, a bad year. I am not a statistic. And I most definitely am not some diagnostic label.

I am supported. I am loved. I am an intellectual. I am a friend. I am a sister. I am a daughter. I am a child of God.

I am Hannah, and I am beautiful.

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Once I realized I had to take time off school because of my illness, I was adamant about going back right away. Fortunately, I found a program to help me get back to school and to support me when I got there.

The program I found is called Fountain House’s College Re-Entry Program. It helped me become a little more comfortable with my bipolar disorder. It’s a little weird to say that, but it’s true. At first I felt like I would be the odd one out when I went back to school. I thought I would be so far behind because I dropped out. But going to this program every day and talking to the other students who were going to go back to school made me realize it could turn out to be a pretty normal ordeal. I realized I wasn’t the only one who had taken time off school, it wasn’t crazy I had taken time off and my bipolar disorder wasn’t going to be the end of my college career. It made me feel good to have a safety net when I went back. I felt more comfortable.

I’m a bit of a dreamer, so I had the idea that going back to school was going to be perfect. That after taking the time I needed off, everything would fall back into place. But over time, I realized even if that didn’t happen, there were ways to navigate it. There are ways to be prepared for the worst and be excited for the best.

It was a process when I went back to school. The mindfulness tactics I had learned really helped me. I hadn’t taken mindfulness seriously in the past because I had been told you had to have complete silence and sit and think seriously. I’m never going to do that in my life. But once I learned ways to incorporate it into my everyday routine, it was really helpful.

On my first day of classes, I found myself doing mindfulness exercises before I had to talk. It’s little things that usually get me on edge and make me nervous, but this time it was better. I was really patting myself on the back.

Since I’ve been back at school, I’ve had quite a few issues with medication affecting my sleeping schedule. Missing classes can really throw off your whole school flow. But I’m still at school and I’m still doing really well. Now, I’m actually meeting with my dean every other week just to catch up. We meet even if nothing is going wrong so we can catch it in time. I think being proactive in this way has really made a difference because I could easily have fallen back into a situation where I had to leave or I was failing classes. Because I am now in a position with this system in place, it has not come to that point. Everyone is working hard to help me finish well and I am working to my full potential.

It was completely different from my first year. I met with the dean my first year, but I definitely didn’t have a relationship with her in the way I do now. Or with any of the teachers I have. I really appreciate my relationship with my teachers. It’s made it as smooth a transition as it could be.

Right now I’m a sophomore and I’m thinking of majoring in biology with a minor in healthcare studies. I think I want to be a doctor. Coming out of school, hopefully I’ll be able to do some sort of health care job.

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It was a simple break, he said.

It would heal fast and well, he said.

Unbeknownst to him, my break was a physical manifestation of a greater issue: my wrestle with bipolar disorder. I went through a period of mania 10 months ago, exercised excessively and consequently broke my foot as a result.

I never told this to the doctor. So, 10 months after the incident, I found myself sitting in his office, in tears because of the searing pain that refused to relent.

“Lola, I’m perplexed. You shouldn’t still be having pain; you’ve been seeing a physiotherapist and the break wasn’t too severe.  Yet, I see from this MRI that fluid is filling into your bones, a sign that your foot is trying to heal but it can’t. I guess I’ll fit you in a walking boot for six weeks and hope for the best.”

I need to tell him.

Like a dam breaking, I finally released the truth to him. I explained that I have bipolar disorder, and I frequently go through phases of extreme agitation or hypomania.

“The walking boots, slab casts and plaster casts fitted for me in the past haven’t stayed on for longer than 24 hours, I’m sorry doctor, please don’t be mad.”

He laughed. “No wonder it hasn’t healed!” Then he got serious. “Lola this is important. I can help you now that I understand. We will fit you with a hard cast that will be impossible for you to take off.”

The myriad of doctors before him had a different approach — they knew I’d take the cast off so they didn’t put much effort or resources into making it secure, thus making it even easier for me to take it off in a moment of agitation. I even had one doctor who refused to cast it. Here I had a doctor going through lengthy measures to ensure my recovery. He tracked down the very last of the fiberglass casting the hospital had, for me. He made it thick and secure. He coached me through how to deal with the agitation that would likely come. He said to call if I had any problems.

When I asked why he was working so hard on my cast, he said, “I want to give you the best possible shot at recovery.”

So to the doctor who cared about my mental health as much as my broken limb, thank you.

Thank you for creating a safe space where I felt comfortable (and not ridiculed) for being honest. Thank you for not blaming me for what happens in my brain.

I respect you and your work a lot. I will try my absolute hardest to work with you because you were willing to work with me and my special circumstances.

As far as I’m concerned, you’ll go down in my books as one heck of a physician.

Thank you.

In that half hour of conversation, I learned something. The more we fully disclose the root cause behind our actions, the more doctors are able to treat us in our entirety. They can only work with what they are told. And mental health is nothing to be ashamed of talking about. I encourage you to be real with the professionals in your life because they entered the profession to help.

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I recently had a blog published by the International Bipolar Foundation. The article was defined by a spirit of hopefulness after meeting my now new fiancé. I was struck by a comment which really saddened me. The post revealed that the reader had been instructed by her doctor to not try to become involved with anyone because “nobody likes sick people.” Additionally, just a few days ago, someone close to me, who deals with a dysthymic disorder, was called “abnormal” by a family member who he used to trust and confide in. With all of this stigmatizing talk surrounding us in our daily lives, it is a wonder why anyone recovering from a mental illness would ever even attempt to find normalcy in hobbies they may have once enjoyed, new opportunities in work, much less in the hope of finding a significant other or forming new friendships. However, as discouraging as this may sound, it is not only healthy but also necessary, to find a way to begin anew for those recovering from mental illness and/or substance abuse disorders, even if that means starting over time and time again and maybe on a different path than before. The time it takes will absolutely depend on the individual, and we must only take advice from the members of our support network who are genuinely supportive and credible. The most important part of answering any question of “when” is to be honest with and know ourselves on a very real level.

When I began recovery from a long manic episode, which cost me my job, friendships, and most everything I owned, as well as leaving me homeless, once I was stabilized and returned to treatment last year, I knew I was in for a lifelong rebuilding process. A myriad of mental disorders, including bipolar and complex post-traumatic stress disorder (PTSD), had stolen a good portion of my life, and I honestly, finally grasped that I had a major job ahead of me. The beautiful part is I found the patience with myself, which had long been lacking in previous recovery attempts. I had to learn how to live in the moment and reassess who indeed I am. I decided I did not like much of what I saw in myself and that even though tackling my issues was a challenge, it was well worth the effort if I wanted to salvage the life I have left to live. I do have rough spots, and I have had some minor setbacks dealing with depression and managing some medication changes, but I know the past eight months have been all about taking baby steps. I have become engaged, have done some traveling, and among other things, I am looking forward to searching for work in the next month or so. I no longer define success in the same terms, but for me, I have already won, and I love what is coming around the corner because I have a great support system. I am in great hands.

My most valuable assets in the world are definitely the people I have in my corner.  From my parents, to the love of my life, my friends, my doctors, and even my priest. All have become invaluable. Another jewel is the wonderful people of the mental health advocacy community online — around the world. These are people who let you know you are never alone. They see the good in you on the days when all you can see or feel is bad.  All of these good people are a reflection of the good I have been trying to become. It is often easy to be discouraged, but someone will always be there to give me a boost when I truly need one. The really good ones you hold onto for dear life because in them you can find an ear or a word which lets you know when you are truly ready to take on a big step. Their encouragement (or cautioning) can be vital in knowing when it is necessary to make a move or even slow yourself down in those instances you cannot see the forest for the trees on your own. Of course, we do not all have or at least are not aware of these “treasures” when we begin, but for all of the negativity in the world, I believe there are also equal numbers who would happily support us when we need it. The tough part sometimes goes back to that all-important measure of learning who we are and knowing who and when to ask for help.

Just like a New Year’s resolution, the important part is just that we start. There might be as many failures as successes along the way, but just as when discussing my desire to return to work recently, my fiancé expressed concern when he asked, “Do you think you’re ready?” I replied without hesitation, “I am not sure, but I am sure of one thing, if I don’t try…I will never know.”

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