My life-long dream to create change in the world is partially due to something I’ve tried very hard to keep secret.
I toiled over the decision to talk about it here, finally deciding that one more voice against a damaging and often ill-informed stigma could be a tiny ripple in the pond of understanding. At the very least if someone identifies with this and feels less alone I will feel like this blog mattered and was worth the risk. There needs to be more awareness so that people can talk about what it’s like living with bipolar disorder and what it’s like to be around someone with bipolar. Much of this blog will be new to even my closest friends and family.
Since the age of 19 I’ve been living with bipolar disorder.
Bipolar is famous for being a disease that affects creative people. I’ve certainly had a prolific career that fits that aspect of it. I do believe some of my drive to connect with people and create change in the world is due to my experiences with illness. Any illness can severely alter your self-esteem. It makes me more empathetic and able to understand when others struggle.
At age 31 I was diagnosed with chronic Lyme including psychiatric Lyme.
Since I have never completely fit the manual for bipolar and my symptoms have lessened dramatically since starting Lyme treatment I believe (as my Lyme doctor does) that I have psychiatric Lyme. Lyme goes to every part of your body. Brain included. My Lyme has had 20+ years to grow in my system.
I called my doctor and he told me based on my increase of symptoms that I was in a very bad relapse. I’ve been so busy with the move that I started to block out the increased pain. I live with quite a bit of pain daily but feel blessed that I can still walk and function. The relapses usually creep up on me. It’s been very difficult to stick to my diet while traveling. I have to make it more of a priority. The next couple of months are going to be difficult. Relapses usually take me a few months to recover from. I’m trying to count my blessings and not be bitter.
But for the purpose of this blog, I’ve spent the last 13 years with a bipolar diagnosis and terrified that if people knew they would shun me. Or judge me. Or look at my behavior through a lens of misunderstanding and preconceived notions. I even had a publicist warn me that it was professional suicide to admit I had it. Society wants those with pretty much ANY illness to trudge through each day and keep quiet about our symptoms. They want to hear about people with disease as heroes who suffer quietly and triumph. So I did keep quiet.
One of the reasons I waited as long as I did to file for divorce was because I was afraid I might lose my son just because of the diagnosis. Even though I work very hard to take care of myself. I take my meds. I go to all appointments. I attend therapy. I make sure I’m getting enough sleep. There are heart breaking stories in the news of bipolar mothers harming their children. I can’t comment on the details of each case, but I believe that if the stigma wasn’t so alienating and shaming many of these women would have been able to access adequate help and precious lives might have been saved.
In our society bipolar stigma is best described with a slang phrase: “Don’t be so bipolar.”
“She is crazy! SO bipolar!” “Ugh the weather is so bipolar today.” Our relationship and understanding of bipolar is never from the point of view of the person suffering from bipolar. It’s always from the point of view of how someone bipolar makes someone else FEEL. It is an accusation that the bipolar person is pushing unwanted behavior on someone else. It also takes the classic swings from high to low and dumbs them down into a cliche of dramatic and unwanted behavior. Many of us don’t experience awesome highs and low lows. We struggle with becoming disregulated and treading water during depressed episodes.
I know for a fact that a manic or depressed episode is hard to bear for the non-bipolar person. But I can tell you living with bipolar disorder and feeling your body change during an episode is the epitome of losing control. It’s downright awful.
When you have a mood disorder, you can’t trust your own thoughts and feelings.
Things that wouldn’t bother you when you’re stable will seem insurmountable. Imagine suddenly waking up as Dr. Jekyll and realizing how much damage Mr. Hyde created while you didn’t have control of your body.
I recently hurt a loved one during a depressed episode. My worst in a very long time. I said hurtful things that “sorry” can’t take back. No amount of words can take the sting away. But I realized something was off and called my doctor. Then I made sure I was getting extra sleep and doing the things I need to do to nurture myself. After the episode, I’m torn with feelings of knowing how I felt and wishing I could take my behavior back. It plays over and over in my mind as punishment.
This depressed episode made me take a hard look at myself and the relationships I’ve had. I can see that there is something inside ME that has played a part in the end of many relationships I’ve had. I can see there were times that I didn’t foster a healthy relationship… This is hard to admit. It’s hard to look back on your life and realize you weren’t doing your best. It also makes a single person wonder if they are even worthy of a relationship or if it would just be easier to do this alone. Less chance of disappointing myself or my potential partner.
A quick Google search will turn up page after page of people who loved a bipolar person venting about how awful they were. The descriptions of their former lovers are hateful, frustrated and depressing.
One thing we should delineate between are the people who know they have an illness and refuse to treat it, and those who have it and work around the clock to manage it. There are many of us who monitor our lives, sleep, diet, alcohol, meds and appointments to a degree that another person would find exhausting.
“I’m fine, but I’m bipolar. I’m on seven medications, and I take medication three times a day. This constantly puts me in touch with the illness I have. I’m never quite allowed to be free of that for a day. It’s like being a diabetic.”
This is our burden, this is how we can function in a society that doesn’t understand. Like any disease, we have to work hard to manage our symptoms. And all of my friends that have bipolar keep it a tightly held secret because of common myths about how we are less of a person.
One friend counseled me to warn friends, family and prospective partners what to expect. I would LOVE to do that, but even I have no idea what to expect. That is what is so frustrating. Based on the past here is a description of what it’s like to love me:
If you’re going through something difficult, I will be your biggest cheerleader and advocate. I have empathy for miles. Most of the time I’m rational but when an episode hits, I can be irrational and not even realize it. I love with all my heart. But when that heart gets hurt during an episode, I want to run far far away. I may hurt you in the process of trying to run away. I want to be happy, but sometimes I get depressed. It’s completely chemical and I wish I had control of it. I’m terrified you’ll see what I’m really like and decide you don’t want me in your life. I’m generous to a fault, with my time and photography. But during an episode I can be selfish because I need reassurance. I’m terrible at asking for TLC.
Many people don’t realize that there is a spectrum for bipolar. Some have it more severe, some less. Just because we’re diagnosed with it doesn’t mean you have to be terrified we will some day act like a “bipolar” person from a Lifetime movie.
Another bipolar misconception is that it just affects our mood. When we experience a manic or depressed episode we feel it in our entire bodies. It’s physically painful. I tend to get edgy and can’t handle physical touch. My skin hurts. I have trouble thinking straight and being in crowds is scary. Many years ago when the bipolar was bad (before we found out about the lyme) I couldn’t leave the house.
Despite the fact that this is inside me I refuse to say, “I am bipolar. I am Lyme.” I am not those things. I have them and work hard to manage them. No one says, “I am cancer. I am epilepsy.”
Many people mistakenly believe that someone with a disorder (depression, bipolar, OCD, ADHD) has the ability to choose to be in a different mood. There are numerous quotes about changing your thought process to be more positive. Can a diabetic choose to have healthy blood sugar? Can a Lyme patient choose to reverse joint damage? I do so much to prevent an episode, but sometimes they come despite my best efforts. Our fearless leader Cath has Hashimotos disease and described it as this:
“How I describe to people what Hashimotos is like (or any disease like this) is what you feel like just as you are coming down with the flu — you feel off but you can’t put your finger on what is the matter until you wake up the next day completely sick and you go, “Oh, that’s what I was feeling.” We feel like that “almost coming down with something” feeling everyday, and just like any virus we are not in control of how it hits us. You can’t change how getting sick feels, you can only support it with rest, liquids etc., but you do not control it.”
Once treatment kicks in, there is such relief. My brain goes from hurting to being able to process information. Then I’m faced with the repercussions of losing control.
I am wracked with guilt and trying not to fall into self-loathing about my recent episode.
As with all of life, there is importance in trying to repair. I will try to repair this relationship to the best of my ability. If I can’t I won’t be angry, just extremely sad. From now on (starting with this blog) I’ll try to better educate the people in my life to understand that there are times I’m not the confident woman I portray professionally. At those times I need extra understanding and empathy. I may need space. Or I may need to help them accomplish something. Helping loved ones grounds me. Sometimes my limitations make me a terrible friend. This has made me realize that I can’t tell people what I need if I’m keeping this a deep dark secret.
Living with bipolar disorder has affected my professional life. I feel like this episode came about because I’ve pushed myself so hard for so long. I’m balancing being a single mom, just got divorced and moved across the country, I’m trying to run a business, grow my social presence, blog here weekly, deal with Lyme disease and be a source of support for the people that reach out to me privately. In all honesty I’m not doing all of these very well. I have girls ready to book shoots and I haven’t booked them because my studio isn’t unpacked. I haven’t unpacked my studio because I’m weak as hell and will need someone to help me move things around. I need to get my bookkeeping in order. I need to find an assistant. I need to get my son in a good pre-school or daycare.
Part of the reason I’ve pushed myself is this list lives in my head like a blinking neon sign that I’m not up to par. I see contemporaries booking jobs, traveling, photographing beautiful things and I wonder if I will ever be able to do what they do. So I push myself to pretend I don’t have an illness. I have many dreams of ways to help people grow their confidence. But I don’t have the strength or time to put them out into the world.
One friend cautioned me against writing about it for fear of losing custody of my son. And because of stories of mothers losing their children, I strongly considered not writing this blog. But I know that I am a loving mother who puts her child first. I have proven it time and again. And I need to write about this because I know that I’m not alone.
I didn’t choose this. I didn’t choose to be sick. I’m doing my best, but there are times my illness gets the better of me.
One blog won’t change such a widespread stigma.
It will however start conversations. It will make someone who is living with bipolar disorder (we so often forget that these are diseases not behavior choices!) from feeling alone, from feeling damaged. The stigma will never change unless those of us that work to manage these diseases actually speak up.
So. Here I go. I hope you’ll come with me and help turn the tides.
Comment about what it’s like to keep something a secret because you’re ashamed of what people might think. Please share this if you’re silently suffering. Please share this if you love someone who is living with bipolar disorder.
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