FOF Christina Daniels’ daughter, *Sophie, was diagnosed with bipolar disorder when she was just six years old. Here, Daniels describes the experience of battling this devastating disease–and the stigma it still carries.
“Up until she was six, my daughter was a little fairy princess,” says FOF Christina Daniels, 48. “She was a happy, smart child–she never even went through the terrible twos.” That year, Sophie Daniels exhibited the first “truly obvious” signs of mental illness, and, Christina says, their lives have never been the same.
Bipolar disorder (also known as manic depression) causes mood swings that range from the lows of severe depression to the highs of mania. Though often controlled with medication, bipolar disorder is a traumatic disease that lasts a lifetime–with no known cure and a high rate of psychiatric hospitalization and suicide.
For FOFs like Christina, caring for a child with bipolar disorder can become a life-long labor of love.
- When did you start noticing that something was wrong with Sophie?
- When she was about six, her father and I started going through a divorce, and she began having bouts of extreme crying–I mean, uncontrollably, for hours. She would talk and write things about wanting to die and kill herself.
- Did she actually hurt herself?
- The first incident of self harm I can recall was when she was six. We’d had a snow storm, and one evening while I was cooking dinner, she walked outside to the end of driveway with no coat, just a dress, and lay down in the snow. She was there for fifteen minutes before my son saw and ran out to get her. We went to the hospital, and she was treated for hypothermia.
- Did you think she had a mental illness at that point?
- At first I thought, maybe she saw a friend outside, or left a sleigh outside, and went to retrieve it, or something like that. But that wasn’t the case. She ‘didn’t want to be here anymore,’ and that’s why she’d walked out in the snow and laid down. That was really the first real strong indication that something wrong.
- How was she diagnosed?
- When we first started seeing all the psychologists and psychiatrists, the condition du jour was ADHD. So first, she was diagnosed as ADHD and put on Ritalin. After the meds didn’t work, an I kept pushing, her doctor looked closer and realized that she had an extensive family history of bipolar disorder on her father’s side. They finally got on the right course after about 18 months. She’s 13 now.
- Has she continued to have problems?
- Yes–she’s been on many combinations of medication and therapy, but there hasn’t been an ‘easy’ fix for her. Her depressive stages have been the most significant and hardest to deal with. She would lock herself in her room; she would hurt herself; she would bang her head against the wall. She refused to go to school–or would go and then just sit in the bathroom and cry. As she got older, the depression would manifest itself in different ways–suicidal thoughts, overeating to compensate for a lack of self-esteem. By the time she was 12 years old she’d gone up to 200 pounds and been hospitalized six times.
- The depression made her isolate herself, but it also made her extremely, extremely attached to me, to the point where I couldn’t move or breath without her right there. Then, around 11 or 12, she became violent–destructive. She had bouts of uncontrolled rage. She became physically abusive towards me. I think she knew that I loved her and I wasn’t going anywhere, so she could take her frustration out on me.
- Yes. I’m a small person–5’1”. When she was younger, I could restrain her, but it got to the point where she outweighed me by 70 pounds. I had to start calling 911. The police came to the house 13 times in 6 months. After the police come, it’s always the same: You go to a crisis center, sit there for 6 hours, and by the time you see the clinician, the child has calmed down and they send you home.
- Eventually, she injured me so many times, I had to press charges. So here we are with an 11 year old kid, charged with assault. It was one of the hardest things I’ve ever had to do. And the judge is chastising me: ‘How can you do this–press charges against your child?!’ But after going through all this, for so many years, I said, basically, ‘I’ve been advised that the only way she’s going to get help is to not let her get away with it.’
- Unfortunately, there’s no set of instructions for this.
- I have been solely responsible for my daughter’s care, and she lives with me full-time. She does, however, have a relationship with her father. Although he does not get involved in treatment and medical care, he tries very hard to maintain a positive relationship and keep informed. The ‘history of mental illness’ in his family is something he has had to deal with all of his life, and he has a difficult time coping with his daughter’s condition. I came to terms with that a long time ago.
- Yes. I had a steady employment history until my daughter was diagnosed, but then things got very difficult. There aren’t many employers out there who understand that you need to leave twice a week to go to a therapist, and to a psychiatrist twice a month, and to group therapy sessions. On top of that, you also have to be ‘on call’ for incidents at school, daycare…the list goes on. I lost my job in 2008, unexpectedly. I was performing way above standard and way above my goals, but it didn’t matter–they needed me to be in the office from 8:30am to 5pm every day, and that’s it. I was rehired by another company, and they seemed to understand my situation, but then my daughter had to be hospitalized for two weeks. Daily visits to the hospital again cut into work time, and my employer began taking away my responsibilities saying I probably couldn’t handle it and should ‘concentrate on things at home.’
- I didn’t–I really went into a tailspin. I thought I had things under control: I’m supermom; I have it all together; I can multi-task like nobody’s business. But you never know when that one thing can come along be the proverbial last straw. I started having panic attacks and instances of anxiety when I couldn’t leave the house. Through the years, I was so focused on helping my daughter, that I did not help me. It’s so important, as a caretaker, to take care of yourself.
- That was eye opening for me. Taking care of my daughter over the years, I felt stress and sadness and anxiety and so many emotions. But this was the first time I was really able to relate to some of the feelings that this child was dealing with. We all get the blues sometimes, but when you actually get depressed it’s very different. You have no control. I can’t imagine being a 6, 7 ,8, 9…13, 14 year old child trying to cope with this. It gave me a whole new understanding and appreciation of what she goes through.
- There are many people who are bipolar and become very high-functioning adults. That’s my goal for her, but I’m aware she may not reach that level. So caring for her is something I’m planning for emotionally and hopefully financially. Is it a scary proposition? No. I’m used to caring for my daughter. I’ve been a mom for 26 years. This past year she’s actually been in a residential treatment facility–somewhere she can get round-the clock care. It’s been the first time in 26 years I haven’t had any kids to take care of. And I really miss it–I like being a caretaker. I do understand, however, that the prospect of caring for an adult child comes with a whole different set of challenges.
- Actually, I just got engaged.
- Thank you. After I’d been divorced for a few years, I did have a 5-year relationship with a man who was aware of my daughter’s condition. But when we moved in with him, it got to the point where he couldn’t take it anymore. She was so attached to me and possessive of my time–that was hard for him.
- Three years ago I met another man–this time through my freelance marketing business–and he has personal experience with children who have issues. He really understood my situation. We can be a support system for dealing with each other and our children.
- Right now, my daughter still struggles with depression. She’s been at a live-in treatment center for about a year, and I’ve seen some dramatic improvement. She’s no longer violent. She’s still cutting, and, at the moment, she’s obsessed with body piercing so she’s tried to pierce her lip and belly button herself. But she’s in a very controlled environment. She’s lost 70 pounds–and she does feel better about herself because she accomplished that. She’s also gotten involved with sports and won 5 gold medals in the Special Olympics.
- When she got there she was on four different meds–Lexapro, Abilify, lithium, Tenex–and now she’s down to two.
- The hardest thing is that there’s still a stigma. People just don’t understand that this is a disease. The only time you hear about mental illness is when someone does something crazy–like shoots a congresswoman. And my daughter is a 13 year old girl–being a teenager is hard enough without having to deal with that on top of it.
- My daughter is a smart, beautiful, wonderful girl who just happens to have some problems that she can’t really help. The goal is, that with love, ongoing treatment and a strong family support network, she can develop the coping skills that will allow her to survive and, hopefully, thrive.
Marketing and communications consultantChristina Daniels is a marketing and communications consultant and the mother of three. She lives in New Jersey.