As an advocate for mental health and those fighting mental illness one of the things I am most passionate about is ending the stigma that surrounds mental illness. I want everyone to feel as comfortable discussing their mental illness with friends, family, and coworkers as they do their allergies, diabetes, heart disease, or any other disease. We should all be able to talk openly and honestly about mental illness without fear of shame or discrimination. I’m going to start by sharing my personal story with all of you.
My mother suffered from bipolar depression and anxiety most of her life though I didn’t know that growing up, and neither did my siblings. Most of the time my mom was loads of fun. She wasn’t the type of mom to sweat the small stuff, and we always knew we were loved. But, like all parents she had her moments. Except her moments were extreme. I didn’t notice anything until I was a teenager. It was around this time that my mom told her doctor she had symptoms of depression and needed an antidepressant. My mom was a social worker who specialized in substance abuse counseling. She worked in the mental health care system of Flint, MI for years often stepping in to help on the psych floor of the hospital when they were under staffed. My mom was very knowledgeable about mental illness.
I didn’t really understand what depression or anxiety was when I was a teenager. What kid does? My mom had long periods where she just didn’t seem to want to do anything. If she wasn’t at work she was in bed, or in her recliner drinking herself to a stupor before stumbling into her bed. My mom could go months without having a drink but any big, important event she would get drunk just before going unless the event had an open bar in which case she would pound back cocktails as fast as the bartender could make them. It might not have been so bad if my mom had been the quiet drunk who sits in the corner, but mom was the loud obnoxious drunk who wandered from table to table annoying everyone in the room with attention-seeking behavior. It was humiliating. She showed up at a school band concert drunk. She dragged me with her to work events where she got drunk and made an ass out of herself in front of management and humiliated me in the process. Her drinking and the behavior when she was drunk cost her a lot of jobs and opportunities. I thought she was an alcoholic. Later, I realized she was self-medicating. Alcohol calmed the anxiety and put off the panic attacks I didn’t realize she suffered from. Alcohol calmed her racing mind and swirling thoughts. Alcohol silenced the roar inside her head. Eventually, my mother stopped hiding her symptoms from me though I had no idea her behaviors were symptoms. Every few months my mother would suddenly become furiously angry with me. Out of the blue she would accuse me of some strange wild transgression and then yell at me, and cry angrily for hours. She would accuse me of doing something to her behind her back. I would tell her over and over that it wasn’t true, that I had no idea what she was talking about, but there was no calming her. Her anger would only rise. She would sob heaving sobs, hyperventilating, while telling me how much I had hurt her feelings, how badly I had treated her. I would say I was sorry over and over but the truth was I didn’t know what I was supposed to be sorry for. Eventually, she would stomp to her bedroom, slam her bedroom door shut, and stay there crying loudly for hours. I would hide in my bedroom quietly crying trying desperately to understand what I could have done or said to trigger her. Lying in my bed I would stiffen with fear when I heard her walk into the kitchen and pour herself a drink. The next morning I would have a knot in my stomach waiting for her to wake up. Most mornings she would be fine and back to the sweet fun mother I knew. Some mornings the ugliness persisted and she wouldn’t speak to me for a few days.
As time went by my mom told me about growing up with anxiety and panic disorder. She was born in 1943, and mental illness was not discussed especially children with mental illness. When my mother would have a panic attack at school she was sent home with a note telling her mother that she needed a rest. My mother definitely had highs and lows. Her highs were harder to recognize because she could be loads of fun when she was manic. Manic mom would bake for days and days. Manic mom was the life of the party. When she was a child her nickname was Sandy Settle Down! Even as a child she had highs and lows. When she became older her lows became more severe. There were bouts of depression so severe she admitted she had suicidal thoughts but no motivation or plan to actually kill herself. These were the really dark days when she would not get out of bed except to go to the bathroom or get something to eat. She would become fixated on a particular topic. My Aunt’s boyfriend’s brother died, and my mother mourned for a man she never met for five days. She cried as though it was her own brother who had died. She stopped crying and finally let it go when I gently reminded her that she didn’t know the man or his family. I’ll never forget the look of surprise on her face and how instantly she stopped grieving as though the previous five days had never occurred. Mental illness affected her appetite. My mother struggled with obesity, but she didn’t eat her feelings. There were weeks where the only thing she ate was peanut butter toast and candy. Another low point had her making hamburgers for dinner every night for months.
When my mother moved to Traverse City I hoped things would get better. Traverse City had more mental health resources than the small Northern Michigan town we had lived in for 20 years. Her sister had recently moved there from California. My mom would have lots of family for support. I was hopeful that she would get better help and improve, but things only got worse. My mother did not have private health insurance. She had a combination Medicare/Medicaid. Few doctors in the Traverse City area accepted that insurance. The few who would take her insurance had a very long waiting list. We got my mom’s name on those lists and we waited, and waited, and waited. Meanwhile, things got worse. Much worse. My mother suffered from an autoimmune disease called ulcerative colitis. UC is a nasty, cruel disease. My mother not only suffered mentally, she suffered physically. Tragically, all treatment options for UC failed to put my mom into remission. The nature of her disease prevented her from being able to leave her home. This put her in social isolation. My mom was a friendly, gregarious, outgoing person. Being forced to remain home while everyone else watched fireworks on the beach, or go out for dinner. Her depression worsened. A particularly severe UC flareup landed my mother in the hospital. Normal treatment for UC flare ups is a short term dose of combination of antibiotic and high dose steroid. High dose steroids come with many risks and one of those risks is steroid-induced psychosis. The first night in the hospital my mother was her sweet, funny, upbeat self despite the pain and nausea. All of the nurses and nurses aides fell in love with her and she quickly became a favorite patient. Her doctor loved her jokes and salty language. The next day my mother was convinced there was a man in her room with a knife waiting to kill her. She was terrified. She was so terrified that my Aunt and cousin took turns sitting with her so she was never alone. My sister had undergone knee surgery during this time and I was helping her. We couldn’t be there with my mom. We both felt so helpless. It was heartbreaking to hear our mother crying over the phone while telling us about all the scary things she was sure were in her room. The next day she stopped crying. She stopped talking. She was gone. Locked inside herself with all the monsters in her head. The doctors told us we had two choices. We could let them treat her with high dose antipsychotic drugs, which would either bring her out of the psychotic state, or make it worse. My sister and I talked it over and told them to give her the medication. Thankfully, it worked. Mom received the dose in the late afternoon. In the middle of the night she woke up, back to herself. Her nurses and doctor were so happy they all cried. My mother was deeply ashamed. She was horribly embarrassed over the entire episode. That made me sad. What had she done to be ashamed of? She certainly didn’t do anything wrong. She was fighting a physical illness -UC, and mental illness every single day. My mom was a warrior. She was a fighter. But, I knew she was right in thinking the rest of the world wouldn’t see it this way. How many friends would be supportive to her face yet gossip about her “going psycho” behind her back? How many would quietly disappear? The fact is there is a stigma surrounding mental illness. People fighting cancer, MS, Parkinson’s, or any other disease are heralded as fighters. People fighting mental illness are viewed as a moral failure. They think the behaviors that come with mental illness are a choice. I’ve said it before, mental illness is not a casserole disease. When a loved one is in the hospital recovering from surgery friends, family, and neighbors turn up at your door with dinner and offers to help with housework and chores. Your coworkers will come together and sign a card and chip into send flowers. But when a loved one falls into a mental health crisis no one comes around. You’re on your own to manage the situation while trying to balance your work-life responsibilities. It’s isolating. It’s lonely. It’s overwhelming.
My mom’s UC continued to worsen as did her mental health, but she hid that from our family in Traverse City and my siblings. She worked so hard to appear normal but she had to have an outlet where she could be herself. People with mental illness are at their worst with those they love and trust the most. Sadly for me, I was the person my mom trusted to be her true self around. In the evenings my mom would call me crying. She would tell me that she saw my daughter playing in her closet. She would call me in an angry rage. The familiar snaps of fury I had grown up with. I would hang up from those calls emotionally exhausted, drained, and grateful to be in my own home sheltered from her episodes. When I tried to tell my family what was going on I was met with surprise, confusion, and disbelief. “I was just with her and she was fine” my Aunt would say. My Aunt would call her after I called, and then call me back to report that my mom was fine. No crying. No angry fits of rage.
Eventually we began to suspect that my mother suffered from bipolar. We tried to talk to her about it and get her to consider a change in her medication, but my mother did not want to discuss it. To my mother, admitting that she had bipolar was admitting that she was”crazy” and she too ashamed, embarrassed, and frightened to accept that diagnosis.
My mom died following complications from surgery to treat her UC. She was high risk for surgery because she had suffered multiple heart attacks and was anemic. However, she was tired of being sick every minute of every day, in constant pain, and confined to her room unable to enjoy her family and friends. So, she pushed for the surgery knowing the risk but decided she would rather be dead than continue existing with UC that was unresponsive to every treatment option. I was heartbroken when my mother died. My mother’s death was not the first loss I had experienced but I had never experienced that level of grief. It was overwhelming. It came in waves leaving me feeling like I was drowning. Through it, my life preserver was an image in my mind of my mom’s spirit leaving her body and seeing the light, realizing that all of her physical and mental pain was gone, and then hurdling herself into that light enveloped in peace.
My mother lived in fear and shame of her illness. She didn’t get the support she needed from her family because we didn’t understand what was happening. We didn’t know the signs of bipolar, depression, and anxiety, and when we did finally figure out what was going on we didn’t know how to help her. No one should have to suffer like my mom did, but too many do. No family should have to struggle like mine did, but too many do. I’m sharing this story about my mom so others who are going through the same will know they are not alone. I’m sharing this story with all of you because I am not ashamed of my mom. Now that I understand what she was going through every day, I am in awe of her. I used to think she was weak. Now, I know she was the strongest person in my our family. And, I want there to be no shame in the mental health game. I want you to feel free to share your story openly and honestly. There will be no judgment here. Only support, understanding, a listening ear, and if you live in my neighborhood I’ll show up at your door with a casserole because mental illness is a disease of the brain, and deserves just as much sympathy, support, and compassion as any other disease.