There has been a lot of comments made in my last post “Feeding the Beast” about how I mentioned I am not medicated. It was long road for me to get where I am at right at this moment. I have been on variety of medications in trying to balance me out. I have been on:
• Neurontin (gabapentin)
• Zoloft (sertraline)
• Depakote (divalproex sodium)
• Eskalith (lithium)
• Trazodone
• Ativan (lorazepam)
• Klonopin (clonazepam)
• Celexa (citalopram)
I have done the medication dance over and over. This with this on this dose. Maybe just this with a PRN (as needed) dose. And it all leads to the same dreaded question from the psychiatrist. “Do you think it is working?” I still get anxiety over that question because the answer always was, “I can’t tell.” The people around me could always tell. I remember when I moved into my apartment and I would talk to my mom on the phone. The conversation would go like this:
General talk for half an hour:
Mom: Are you taking your meds?
Me: Ah, yeah!
Mom: Sure. When is the last time you took them?
Me: Last night like I am supposed to.
Mom: No really. When is the last time you took them?
Me: LAST NIGHT!
Mom: Ok. So when is the last time you took them before that?
Me: a week ago…….
Mom: I thought so. You know they only work if you take them every day.
My mother has always been able to call me out. Most people didn’t know I was on them in the first place to even notice I was off of them. So every time I went to the psychiatrist I would try to fish around to see if my mom noticed a difference. Sometimes I was just get annoyed at my psychiatrist’s inability to believe I couldn’t tell and just lie. “Yeah sure, this dose is working great.” I would get the nod of approval and see he/she in three months.
I am sure many of you may not understand how I couldn’t tell the difference. Many people’s bipolar disorder is late onset. Therefore they have spent most of their lives normally and then something triggers the rollercoaster of moods. For me, however, this is how I have lived my entire life. They believe I had it as young as 7. Possibly younger than that but that is when I was able to remember incidences that alluded to bipolar disorder. I am now 28 so that means for 21 years I have had Bipolar Disorder. I wasn’t diagnosed until I was 16/17. (I was hospitalized before my birthday and started therapy right after leaving the hospital. I turned 17 in the meantime.) So that means for 11 years before diagnosis, I was dealing with it unknowingly on my own. I had always known that there was something different about me. I have always noticed that I think differently than other people. I have always felt out-of-place in group situations. It is not that I am anti-social. I love being in group settings but I have always had a hard time feeling like I belong.
I remember once that I had actually gone to my mom about this. In the great age of dial-up, I came across a mental health quiz. It had indicated that I could have Bipolar Disorder. I took my findings to my mom. She just looked at me and told me that I wasn’t Bipolar and it was all in my head. HA! Oh the irony. In her defense, I was always known to be moody and dramatic. I also have had this strong need to fit in. I was growing up in the generation of the apathetic teen. You know before the next generation decided to ruin it by making it into emo. I had this group a friends who decided to be depressed and apathetic was cool. However while they were looking for reason to be depressed, I really was depressed. Another reason she dismissed me is because my father was an undiagnosed bipolar. She had seen what life was like with one and I don’t think she wanted that for me.
So I continued on knowing something wasn’t right with me until I had my breakdown. When I was diagnosed, it was both a shock and a relief. I was relieved to know that this wasn’t all in my head and that there really was something not right. At the time, I didn’t know really anything about the disorder. I thought it was like depression. Something someone can have, get medicated, do some therapy and eventually get over. I had no idea it was a life sentence. It was crushing actually to know I was going to be like this the rest of my life. So we started treatment.
This is when the real anxiety began. Treatment is not just seeing a shrink, talking about your problems and popping some pills. It is a complete lifestyle overhaul. You need to sit down and evaluate your life. You have to look to see what your triggers are and how to either avoid them or deal with them. For instance, I am prone to insomnia during mania. A way to avoiding a cycle of insomnia is going to bed at the same time every day and getting up the same time. Easy to do except when you are a teen and staying up until 1am with your friends is the thing to do. It forces to rediscover who you are.
In some cases, it means remembering who you were before your illness was triggered. In my case, it was separating myself from the bipolar. It sounds pretty easy on paper. Except, I hadn’t damn clue of where I started and where the bipolar ended. On top of that, what teenagers knows who they are? I sure as hell didn’t. I was completely lost. I started to question everything about myself. I was having an identity crisis. On top of that people started only seeing me as my disorder. Nothing is more crushing when your feelings are only seen as mood swings. I had lost all validation and sense of self. I started to believe that I was my disorder. I believed that there was no difference between my personality and my disorder.
I became angry and bitter over the next few years. I kept everything to myself. I mean why bother if I am going to be dismissed anyway? It had actually became so bad that I was in a physically abusive relationship that I kept to myself. I figured no one would believe me anyway. I stopped telling people that I had bipolar disorder. It was my shameful little secret. Then one day I hit complete bottom. I started cutting myself again. I would wait until he was completely asleep and then I would go to the bathroom. I would lock the door and then break my razor and pull out the blade. I would just sit and the bathroom and cry as I cut myself. I had given up.
What was it like when you were first diagnosed? How old were you? How did you handle it? Did you tell anyone?
Lauren Kocher 
I am currently 19 and I was diagnosed exactly a week ago.
It was a relief because for years I had wondered why I kept getting depressed and my whole life especially my teenage years were marked by frequent mood swings and crying spells over things. I had known my whole life I was different and during my adolescence I didn’t understand why I would never know when I would be the fun, hilarious, extremely quiet, confident girl or the shy, quiet introvert in the corner.
I was glad that I had proven my parents right who had kept saying that as I am 19 it is probably still “teenage mood swings” and my mum would just call me a “drama queen” all the time.
I looked on the positive side of bipolar and thought of all the successful artists, writers and musicians who had it; it’s like we are a part of this elite group of very talented, creative people who see the world differently.
However, of course it felt like a life sentence to me as well and it has been sinking in that however much I want to indulge in all of the pleasures of life I am going to have to make a lot of changes to my lifestyle, mainly my alcohol consumption.
I am currently unmedicated and have found it even more difficult to work whilst hypomanic than depressed. All I seem able to do right now is write poetry and read poetry.
I told my parents and some of my friends and was shocked to find that one of my friends seemed to not believe I have Bipolar even though a psychiatrist diagnosed me.
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Poetry was my escape as a teen. I felt it was the only way I could get the thoughts in my head out. I haven’t written a lot of it lately and I should probably start again.
I have found that people have such a concrete concept of what bipolar is like in their head that they don’t understand when they really meet someone with it. When they find out someone they know has it, they have a hard time believing it. They are convinced they could spot it from a mile away.
I hope you find a treatment that helps.
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Yes, I feel very much the same. Yes, you probably should! Not only is it a great release but you can create something beautiful.
Ah, I see. My dad is very much in denial of the fact that I am even hypomanic right now or that what I am experiencing is hypomania even though I am acting in an abnormal way especially regarding my sleep patterns and my counsellor keeps saying I am talking really fast.
Thank you! I hope that you continue to thrive whilst being off the meds.
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I know exactly what you mean about not knowing how to answer the question about, “Is it working?” How can I know what I’m supposed to feel like? I’ve never felt it! You know? Am I supposed to feel “all better?” Well, I don’t, so I guess they’re not working? But I’m somewhat better, so maybe they are working? A little? Ugh! I waited 35 years before giving meds a shot. I didn’t know I was clinically depressed. I just thought I was doomed to be unhappy, that’s all. Nothing I did made me happy for more than a day or two. At least I have that to be thankful for … knowing that material things is not where it’s at. 35 years before I went for help, then meds, then years more of trial and error. Now I’m 58? and at an “okay” place with the depression always an arms reach away. I’ll take “okay.” It’s better than pitch black.
Thanks for sharing your story and thanks for allowing me to share.
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If we’ve always had a problem we often don’t realize until we start to feel differently. I now know that I always lived with some level of anxiety. Until I found the right meds I never knew what it was like to be totally relaxed. It took me 40 years to begin to improve. I say that life began at 50 for me and its never too late to change.
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Glad that you found a treatment that works for you and are feeling better, Lauren! Wishing you the best 🙂
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Wow…. I will be honest. I’m at a loss of words. And gabby like I am, it doesn’t happen often.
I’ve heard about this often, but have never experienced anything like it. So I can’t begin to imagine that takes place inside your mind. But glad to read you found a treatment that words for you. Blessings!
Renee-Ann <
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It is clear to me, especially by the comments, that you are offering a great service to many simply by being your authentic self. There is much POWER in that.
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Thank you Elise! I just want people to know they aren’t alone.
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I shuddered when I read a couple of the names on your list of meds because of the effects they had on me. My problem was anxiety which when extreme led to depression.
I well know the feeling of not fitting in, wondering why and the subsequent “why can’t I be like them” and the self blame about being weak and not good enough. It wasn’t until I found out the cause of it that I could separate myself from it and slowly let go of the blame. In my case the cause is a genetic disorder and I did find a med that helps. It was nothing to do with serotonin but adrenalin. Then came the process of changing the way I thought of myself, ridding myself of low self esteem and and lack of confidence and accepting myself for who I am. Pushing and pushing myself to be something different just piled on the anxiety.
I admire you for talking about your illness and making people aware. More awareness leads to more acceptance and less discrimination. More people will be willing to get the help they need and, with understanding, all the extra psychological pressures we put on ourselves will lessen and won’t make our conditions worse.
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Hey Lauren,
WOW. Your story is very intriguing. You made me curios and this is my first time learning about bipolar disorder. Thanks for sharing your experience and I wish you the very best.
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I understand what it’s like for people not to believe you have it. For me, it’s ADHD.
“ADHD doesn’t exist!” some will say. Or, “It doesn’t exist in adults!” Or, “It’s so over-diagnosed!”
Yes, it’s over-diagnosed, but at the same time it’s UNDER-diagnosed. Many people have it and don’t know it, just as you did with bipolar.
Some people don’t believe I have ADHD because I don’t appear to be hyper. I wish they could live a day inside my head. I’m an introvert, and most of the hyperactivity is internal. And, I have lived my whole life trying to act “normal”. Since I am now over 60, that means I’ve had a LOT of practice. So much that I don’t catch myself doing it most of the time.
Thank you for your courage in writing about this, Lauren. I’m sure you are a great encouragement to many!
Willena
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Yes to just about everything you have written. I was in my twenties when I was first diagnosed with bipolar disorder but had been unknowingly self-medicating for many many years. I had a lot of issues to deal with and the underlying bipolar disorder (and ptsd) didn’t help. It was a long road to get the help I needed.
I can’t even remember the names of all of the medications I went through, most making things much worse. I finally found one that worked okay and helped balance me out, but after nearly 10 years medicated, and a change in living circumstances I’ve had to stop taking the medication. I’ve been unmedicated for awhile now and doing well because I was able to understand my triggers just as you mention. Everyday is still a battle and will be for the rest of our lives but knowledge and understanding go a long way. As well as derby!!! I can’t say for sure, but there’s a good chance we’ve skated together (or against each other) as I use to skate with a sister team in PA. Derby was definitely a life changer for me. Taught me to accept who I was no matter what. I miss it terribly.
Anyways, I came across your HealthiNation video through my fb feed and then found your blog. Keep it up, more knowledge dissemination will hopefully lead to less stigma. Wish I’d had a chance to get to know you in person. Cheers!
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