“Mental Health problems don’t define who you are. They are something you experience. You walk in the rain, but you are not the rain.” — Matt Haig
Cindy Crissman-Smith, a recently retired Charge Nurse for the Acute Psychiatric Unit of Stormont Vail Regional Medical Centre in Topeka Kansas, describes bipolar disorder as “a syndrome that affects a person’s moods.” “It is defined,” said Cindy, “by highs referred to as mania which in excessive cases can cause the person to lose touch with reality. They will also experience drastic lows commonly referred to as depression. The changes in moods are abrupt and extreme — there are three types of bipolar disorders that are defined by their severity, frequency and whether hospitalisation is required during mood episodes. Some of the more common symptoms a person may experience with this illness, besides involuntary and extreme mood swings, are difficulty sleeping, inability to concentrate, anxiety, impulsive behaviour, anger and frustration – to name just a few.”
What does it feel like to live with this condition, day in, day out? How does it impact a person’s relationships? Is there anything that can be done to keep the condition under control?
I spoke to two women diagnosed with bipolar disorder to find out more.
A Late Diagnosis
Laura, a 50-year old divorced woman from Kansas, was not diagnosed with bipolar until the age of 40. The first signs of the disorder, however, can be traced right back to her youth.
“I had a lot of problems growing up.” said Laura. “I was impulsive and I had anger issues. My parents thought it was just teenage rebellion — I started drinking in junior high, smoking pot and self-medicating. It made life easier for me. My parents thought my problem was drugs and alcohol, so they tried to get me treatment for it. But it didn’t work, because that wasn’t my problem — it was my solution. I didn’t understand what was wrong with me. I thought I was crazy.”
“Nobody knew what to do with me — they tried everything.” Laura continued: “They made me attend therapy, put strict curfews on me, tested me for drugs regularly…but nothing worked. Once I reached adulthood, everyone just stepped back and accepted that this was just who I was. I moved to my uncles in Oklahoma. I met a guy and got married. Too quickly, I guess — I was pretty spontaneous. I thought I was in love and I wanted a family of my own.”
I asked Laura whether the marriage helped with her situation: “Maybe at first, when everything was new.” she replied: “But it wasn’t long before we started having problems. He was in the military and was away a lot, We were both young, too. Anyway, it didn’t last — five years later we were divorced. I was moving around a lot, making plans, getting high and was just really lost I guess — nothing in my life seemed to last. My family loved me, but they didn’t know what to do for me. I didn’t know what to do with myself. I would give up, feel guilty, then try again. My life was like a roller-coaster. Nothing made sense.”
At what point did things change, I asked: “I drove my car off a bridge.” Laura said: “I’m not sure what caused the wreck because I don’t remember, but it was pretty bad. My heart stopped beating twice. I was in a coma for nine days, and it changed my life forever. I had to learn to walk and do simple tasks. I suffered a traumatic brain injury, so from then I had a reason for acting so crazy.”
Even then, it wasn’t for another ten years before the doctors realised Laura’s erratic behaviour was about more than her brain injury: “I was forty years old and there were things going on with me that were not because of the brain injury.” said Laura: “I wasn’t drinking or doing drugs anymore, so I was aware of all the chaos inside of me. I couldn’t sleep. One week, I was super depressed, and all I did was lie in bed and keep to myself, feeling hopeless and distraught. I had no appetite, no energy. Then, a week later, I would wake up raring to go. I was calling everyone, eating everything in sight, unable to sit still, smoking cigarettes and walking the streets aimlessly. I was impulsive and unfocussed. I felt like these switches would go on inside me and I couldn’t control them. I went to the doctor and I was all over the place. She diagnosed me, almost immediately, as being bipolar.”
For Laura, the diagnosis was a revelation: “Oh my gosh, I was so relieved.” she said: “I told you that my dad was bipolar — well, I don’t really understand why nobody made the connection. For the first time it made sense. All this craziness going on inside me, it all made sense. My family finally seemed to understand, I believe that lights went on in all of our heads. It is really hard to struggle with behaviour that you know isn’t normal and nobody knows what is wrong. You just feel broken, like a defective toy or something.”
It didn’t solve everything: “Knowing what was happening to me was a small sort of comfort, but my real life journey was just beginning.” Laura explained: “We had to find what medications would work for me and what wouldn’t. Once, I had a bad reaction to this medication my psychiatrist put me on. I took off for three weeks and ended up on the streets in Tulsa Oklahoma, with some pretty scary characters. When my family finally found me and brought me home, we had to go through many drug trials to find the right drugs to help me.”
Now, Laura takes three medications to help control her moods and depression and an additional one to help her sleep.When asked if the medications work, she replied: “They do help, but you have to understand, they don’t fix you. It’s not like you take your meds and life is good. I still have to work hard. Some days are harder than others, but I am not about to give up. This illness isn’t going to beat me.”
“Every day is different.” Laura continued: “Some days, I don’t do very well. I stay to myself, and I don’t get much done. I close myself off if it’s really bad.”
Laura is getting better at coping with the bad days: “I take my medication every day.” she said: “I talk to my psychiatrist about how things are going. I pay attention to how I am feeling and if the medication is working. It can be a hassle I guess, but it’s better than giving up. The medication makes the moods easier to manage. They don’t feel so extreme or out of control and I try to keep unnecessary stress out of my life – my family and friends are really supportive too. I am blessed I think, but I have to take my life one day — sometimes one moment at a time because my head does not work like other people’s heads. I have to live differently.”
Laura has also developed strategies to help keep the bad days at bay. She said: “I like to help people. When I take care of others, I am not so worried about myself, not so focused on every little thing. I take care of myself, but helping to feed the homeless, helping my elderly neighbour carry in her groceries, buying a little gift for a friend or feeding the geese makes me feel good and it makes me realise that I am necessary. Like, the world is better, because I am here.”
A Holistic Approach
After speaking with Laura, I knew there was more to learn about this illness. The inner workings of our brain can be fascinating, and troubling all at once. I contacted Valarie, who is 34 years old and lives in Arizona with her husband and four children.
Valarie contacted me before our initial meeting.:
“Hey Kathy, I wanted to let you know I might have to reschedule for next weekend.” read her message: “My daughter was hit in the face with the top of a coke machine, coming home from California last night. I’m kind of going into an episode. I don’t know how I am going to be next weekend. I will check in with you on Friday if that works. Thank you so much. I hope you understand.”
When we finally got round to meeting up, I asked Valerie whether things had improved:
“Well, I got my prescription, my daughter is fine, and I am levelling out with my bipolar.” she replied: “So I think I am ready to do this interview. You know the real story that you should be writing is on how much health care sucks in the United States, but that is a story for another time.”
We began by discussing Valerie’s relationship with sleep: “Sometimes I sleep really well.” she said: “And sometimes I don’t sleep at all. Some nights I stay up all night, so that means I am up all day, all night, and all day again. I have found that sleep medication doesn’t really work for me — it just makes it worse. I end up sleeping all day and I wake up behind on my medication and feeling weird, or when I wake up I am groggy and feel out of it. Ever since I got out of the hospital this last time, I have been really good about maintaining a sleep schedule and that helps.”
I asked Valerie if she uses any techniques besides medication to handle her bipolar. She replied: “Yes, I do add a holistic approach to this illness. My therapist told me that the morning sun is the best antidepressant I could get, so I use the sun. I do some grounding once in a while, like going to the beach, or even just sitting outside on the grass and meditating for a while. I’ve read that meditation, done every day for eight days, will help to rebuild connectors in your brain. I haven’t been able to do it every day for eight days yet, but I’m trying to get there.”
Valerie also uses her diet as a means to control the condition: “I read in an article — I’m always researching ways to manage this illness — that blueberries, oats, yoghurt, even pickles, if you can believe that, help with your stomach and also your mind, since one is connected to the other. Oh, and fish with those big omega 3’s— good for the brain and no fast food.” she said.
Alongside this, Valerie also takes medication: “I take medication for seizures, which also act as mood stabilisers,” she said. “I am on two other mood stabilisers, I take medication for compulsive behaviour — drinking and gambling etc. Then she gives me sleep medication which is prescribed to use as needed. I rarely use the sleep medication — as I already explained to you, it makes me groggy.”
I asked Valerie if she has ever needed hospital treatment for her bipolar. She replied: “When I am admitted to the hospital, it is so they can monitor my behaviour, to get me back on track with my medication or change my medication if it is no longer working. They put me on an eating and sleep schedule. By the way you should know that the food is horrible, so the hospital doesn’t really do a good job there, but it is state run so they don’t have the funding to do better. Basically, they just make sure I am sleeping and eating right, my medications are working and they monitor my behaviour. I normally stay anywhere from a week to one month. It depends on my behaviour and when I come out of my episodes.”
When asked what she would like people to understand about bipolar, Valerie said: “I want people to understand that this illness affects my life in all aspects. It scares the hell out of me to go to Church because I have had two episodes at church and I am afraid to go through that again. I have to watch what I eat. I try to eat healthy but it doesn’t always work because the medication I am on makes me crave carbs. I have to stick to a strict schedule. I get angry more than I should at people, sometimes I snap at my husband when I am really upset with my children, or I snap at my children when I am really upset with my husband. You know, it just varies, and it’s hard to calm down sometimes. I can obsess over things like a conversation I had and I will re-run that conversation over and over in my head and see it playing out differently each time. Look, sometimes it’s overwhelming and I hate being bipolar.”
Valerie is hopeful time will make her symptoms a little easier to handle: “I’d like to find that this time I am on the right medication and the episodes will happen less and less.” she said: “Then I can become stronger for my family, be the best me that I can be.”
“You know, I was diagnosed with attention deficit disorder (ADD) and depression at a young age.” Valerie continued: “I know what it is like to be different, to go through things that not many people understand. I know people diagnosed with any type of mental illness are struggling. I have questioned why God made me this way. I mean what is the point? Why must we endure so much pain and anguish? I want people to know that they are not alone. I would like to help people like me.”
Valerie recently created an online support group and blog to help people struggling with similar problems to herself. When asked why she created the support group, she replied: “Like I said, there are a lot of people out there hurting and alone. The doctors can prescribe medications to stabilise us. They can monitor us and talk us through issues. My family tries very hard to understand and support me, but there must be more, you know?”
For Valerie, the answer lies in community. She said: “I am hoping that this group can provide a way for people struggling with mental issues to be there and support each other, to share our findings when we research, or when doctors learn something new about how to help us. We can share healthy food recipes. We can share with one another what works and what doesn’t work for us. Maybe, it will be a place where we can vent, or listen to one another. We can build our own support system of people with similar struggles. Nobody understands what we are going through better than we understand ourselves. It is a way to remember that we are not alone in our illness, to remind each other that there are people out there struggling just like us, and there are answers. We are not alone in this somewhat chaotic and crazy life and each day we will learn a little bit more on how to manage our illness, and how to prevent our illness from managing us.”
Both Laura and Valarie are courageous women. This is a relentless, at times volatile disorder that takes one’s emotions hostage. The individual no longer has control over how they feel with each passing day. The doctors must decide which medications will work for each individual and this appears to be a trial-and-error programme, in search of that magic combination to help the individual become more stable. There is also the possibility of immunologic responses, allergic reactions, contraindications or side effects to consider.
For both of these women, the plan is to get through each day without this condition taking over. Sometimes they lose the battle, and fall. But, broken and battered, they get back up. As with many others who fight mental struggles, these women bravely combat obstacles that most people never have to or could face. They fight with everything inside of them to be a part of a world that calls for consistency, order and discipline.
Society demands we control ourselves, our actions, even our feelings – to avoid making it difficult for those around us. Until they find a cure for Bipolar-disorder, people living with this illness will have to fight to exist, to play an active role in this life, to reach for and obtain happiness. They will at times, fight for their sanity or play an active role in the lives of loved ones. Most importantly, they will fight to realise they have true value, they are needed, loved and that must never give up, no matter how hard it gets. They fight through the brokenness – to realise the beauty of who they are, for they are true warriors.
Editor’s note: You can find Valerie Butler’s blog and forum here.