This article is part of Health's new series, Life Interrupted: Living With an Invisible Illness. Each month, one women will share what it's like to appear healthy on the outside while navigating daily life with a serious physical or mental health condition.
I have had a long battle with my mental health. Ever since I can remember, I was anxious, and I constantly experienced symptoms of depression and obsessive compulsive disorder (OCD). Yet I never sought professional help.
During my freshman year of college when I was 18, things started getting really bad with my depression. I had no motivation. In high school, I had a very high GPA and was in many A.P. classes. In college, I really wanted to be that motivated, but I couldn't find the energy.
Back then, I was exhausted. I would get out of bed for class and a couple of meals and that was it. I didn't recognize this as mania, nor did I know about another symptom I had: a lack of focus. My brain was in so many places at once that it was extremely difficult to study, which was a problem. My mom encouraged me to see a therapist, who put me on my first antidepressant.
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I also started having what I later learned were manic episodes. I would go a week or more without sleeping. I couldn’t sit still; I would run laps around campus because I felt so anxious. But then I would have really low lows. I would feel very lethargic, and I didn’t want to engage with other people. I would avoid going to dinner and generally stopped taking care of myself. I wasn’t exercising or showering. I just had such a lack of energy.
I was struggling so much, I had to take time off school during my junior year. I made multiple trips to the ER because I was extremely anxious and depressed and needed a change of meds. During that time, I had one of my worst manic episodes. I didn't slept at all. I felt like I was going to jump out of my skin—like I was going to explode. My therapist suggested I see a psychiatrist, but the waiting list was over a month long. My parents made a desperate call to a family friends who knew a psychiatrist, and I was able to see him a few days later.
Diagnosed—but still struggling
He diagnosed me with bipolar disorder, and I was started on a regimen of mood stabilizers and antipsychotics. For the next nine months, I had to figure out the right drug combination because I endured a lot of negative side effects from my medications. Finally I went back at school, but I was still struggling to take care of myself.
Then, at the start of my second semester of senior year, two of my best friends were killed in a car accident. It sent me into a downward spiral. It was more extreme pain on top of pain that already felt horrible. After that, I just wasn’t able to do life and get better at the same time. My psychiatrist suggested to me and my parents that I enter a young adult mood disorder residential treatment program. I was admitted the day after I graduated college, and it's where I turned 22.
I was there for 45 days. I saw a psychiatrist 1-2 times a week. I attended group and individual therapy sessions, which included different types of therapy. Every morning was 30 minutes of mindfulness therapy. We did art therapy and experimental therapy, like ropes course, play games, canoeing—things to push you out of your comfort zone. I also started dialectical behavioral therapy (a type of talk therapy that focuses on identifying and changing negative thinking and behavior). Each day was extremely scheduled. It had me getting out of bed, taking showers again, eating normal meals. I also figured out the right drugs for me.
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What daily life is like with bipolar disorder
I am now 26 and have been living with bipolar disorder for about six years. The residential treatment program definitely turned my life around and got me on the right track. But living with bipolar disorder is something that I have to deal with every day. It effects almost every aspect of my life. This is what it's like.
One of the most difficult things is managing medications. I am usually on 4-5 medications at a time, and they are always changing. The side effects can be really hard. Weight gain is a huge problem; these drugs increase your appetite like nothing else. I have to control my food intake, and I hate it.
My mouth also gets really dry. I bring a water bottle with me everywhere. Constipation is a problem on some meds, and so is nausea and vomiting. Akathisia, or the constant urge to move, is one of the worst side effects—it makes you want to crawl out of your skin. Another drug I was on caused cognition problems. I went off it because I felt like I was becoming stupid.
I work as a behavioral health researcher in Washington State, but I’m reluctant to take time off when I know I really need to. A few months ago, I had to take off a couple of days because of my medication. I was switching meds, and while we were increasing the dosage to find the right amount, I would feel horrible for five days at a time. I still have to go on with my life even though I feel awful. I couldn’t really tell anyone. So I was at work with a horrible headache, feeling sick to my stomach, and I just had to keep going. That’s what people with invisible illness have to do every day.
I wish I could be more open with my coworkers, like, ‘Hey, I just switched meds for my bipolar disorder. If you could just help me out here.’ Or even just for them to know that I’m not slacking off on purpose. But I can’t say that. In this case, I ended up telling a coworker that I wasn’t faking it, that I was having this problem and here is why. As someone dealing with mental health issues, I feel less inclined to share details about why I need a day off than, say, someone with a physical illness.
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All of my close family and friends know that I have bipolar disorder, but I typically don’t tell people until I’ve known them for a long time. This has made dating really hard. I tend to date guys for a time and then I freak out that I will have to tell them. Honestly, I've never told a guy who didn't previously know that I have bipolar disorder. It really freaks me out because I don't want to be dumped just because I'm bipolar. Dating is really hard for me.
Having an illness that isn't obvious also impacts my social life. I can’t stay out until 3 a.m., and I can’t drink very much. I can have maybe ine drink, but alcohol just doesn’t interact with my meds. If I drink too much, I get violently ill. But again, my friends have been extremely helpful and supportive. It's really nice to be able to say that I'm having trouble with a medication side effect, etc and they're willing to change plans to fit whatever activity we're doing to how I'm feeling. I try not to be a burden though, and I often only talk about it if the side effects are severe. Like I'm not going to ask my friends to change their plans for dry mouth. I'll just take a water bottle.
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Coping with an illness no one sees
Luckily I have learned a lot of great coping mechanisms to deal with my invisible illness. One of the therapies I learned in my residential program is part of dialectical behavioral therapy. It’s about doing the opposite of what your mood or emotions might drive you to do. For example, if you feel down, don’t go listen to sad music. Don’t watch a sad movie—watch a happy movie. I recommend that to my friends all the time, too.
Exercise is also a big part of improving my mood. I try to exercise four times a week; it’s just a natural antidepressant. Intense cardio is the best for me. I think one of the reasons I was able to get through high school is because I ran cross-country and did Irish dancing, and that gave me a lot of cardio every week. I always feel calmer when I do intense cardio, like bicycling, which is my current favorite.
But the number one thing for me to keep well is a sleep regimen. I have an extremely strict sleep schedule that doesn't change. I take my meds at 8 p.m., go to sleep 9 p.m., and wake up at 6 a.m. On weekends I will be a little less strict, but through trial and error I know that sleep is the most important thing for me to prevent mania. I also do my best to eat at the same times every day.
My psychiatrist also does my therapy, which is rare. I'm in the middle of moving, though, and finding a new psychiatrist is really, really hard. There’s not enough of them to meet demand and waiting lists are months long. I'm grateful for my close family and friends who do know about my bipolar disorder, and that I can talk to them anytime about it if I’m struggling.
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Sharing her story to help others
It can be hard for me to open up to people in person, so I also started a blog that has helped me share my story and write about my experience for others to read and understand. It’s a way for me to spread awareness and to demonstrate, Look! She’s normal. She has a job. You’d never know if you saw her walking down the street that sometimes she ends up in hospital, yet she’s still amazing. One of the most awesome things about coming clean about my mental health is that so many people have opened up to me about their own mental health struggles. Everyone has struggled with something.
But bipolar disorder is not going to stop me from living my life. I plan on going to grad school. I’m about to start an addiction research job at a university here in Washington. I plan on getting married and having a family. I plan on living whatever life I want to live. I will always see a psychiatrist, and I will always be on meds.
I’m hopeful that 10 years from now, there could be a medication that comes out for bipolar disorder so effective that it's the only one I need to take. I’m looking forward to the day changes and innovation happen. I am going to keep living my life, because I have the resources to be well right now. I have the energy to be well. I am well. And I’m lucky for that.
If you have a story to share about living with an invisible illness, email us at email@example.com