Windows Into Mood Speech

This is a speech that I gave at the "Windows Into Mood" conference put on by the Mayo Clinic about a year ago. The audience consisted mainly of healthcare professionals getting required continuing education credits, so I used my personal story to address some of the ways that medical professionals are helpful and some of the ways that they are hurtful to people with mental illness seeking treatment. 

I have struggled with depression since I was 12. My childhood before that was very happy, I was a sensitive kid but I come from a very loving family. As I moved into adolescence I became very self-conscious and socially anxious, and unfortunately right as that was happening my family moved from a small town to Minneapolis.

When I started middle school in Minneapolis I was completely terrified. I didn’t talk to people, I didn’t make friends, I just kind of existed, and I felt invisible to my classmates and teachers. Sitting in class a lot of times I would feel like I was about to cry, because I missed my old home so much, so I would dig my fingernails into my hands, to use the pain to distract me, to stop myself from crying. Eventually I started scratching myself with a safety pin in the bathroom between classes, and for the next 10 years I had a safety pin clipped on to every pair of shoes I owned. I pretty quickly moved on from safety pins to using scissors to cut myself, but I was obsessive about having a safety pin as back-up. It made me feel comforted somehow to know that wherever I was I always had a safety pin on my shoe in case my emotions became overwhelming that I needed to control them by hurting myself.

Now, unfortunately I suffered from severe depression and social anxiety throughout my teenage years without ever getting professional help. My parents saw that I was unhappy, but they really didn’t know how bad it was, because I didn’t tell them, and they didn’t ask. I think a lot of parents stay in denial about their children’s mental illness because it would be too painful to admit that their child is suffering, they love their child so much. And I hid it because I didn’t want to upset them and I felt like if I said the words “I’m depressed” out loud that I would just break and fall apart. I was ashamed of how unhappy and anxious I was, and all of us bought into the myth that teenagers are supposed to be unhappy. I thought that I could grow out of it, and every school year I started off with high hopes and plans, that this year would be different, that I’d make a bunch of friends and be happy. Of course that never happened, but I strung myself along on that hope and I stayed alive.

Right after I graduated from high school I went to Denmark for a year as an exchange student, again thinking that this was my chance to start over and have the wonderful high school experience that I never got to have. But things stayed exactly the same. In January of that year I turned 18, and I finally thought, “I’m a grown-up now, and I’m still depressed, I still hate myself, I’m still crippled by social anxiety, I’m not going to grow out of this.” And I felt so hopeless and devastated and desperate that I decided for the first time that I needed to die.

But I couldn’t bear the thought of my parents getting me home in a body bag, I couldn’t do that to them and I wanted to say goodbye, so I decided to wait until I was home again. In the meantime I finally got professional help for the first time. I started taking antidepressants and going to therapy and I gradually started to feel better, so that by the time I came home to Minneapolis again I was actually excited about starting college. And, although the medication didn’t completely cure my depression it did help immensely with the social anxiety, so that when I started college I could actually talk to people, I made some great friends and felt really hopeful that from now on my life would be different.

But I was still unhappy and still using self-injury to cope. I put on a happy face and tried to be the perfect college student, believing that if I could accomplish that, I’d finally be happy. By my 2^nd year of college I was doing great academically, I was taking honors classes, I was an RA, a lab instructor for general psychology, and I worked part-time at the art gallery on campus. My life seemed perfect, but as depression took hold again I couldn’t keep up with everything. One night I was sitting in my dorm room and there were so many negative, hopeless thoughts spinning around in my head, and I just wanted it to stop. I started cutting my arm, and thought, “if I can just make myself bleed enough, then I’ll pass out from blood loss and the thoughts will stop.” I was really desperate. I knew that dying was a possibility, and I didn’t really care that much, but it wasn’t really my goal either.

Luckily the cutting calmed me down enough before I caused life-threatening damage, but I did need to go to the ER to get stitches, and after that I stopped pretending because I didn’t think I had a future, I thought I’d be living the same cycle of depression over and over. I resigned from all my responsibilities, dropped out of school, and moved home with my parents. They did everything they could to take care of me, to help me. They kept me alive.

The next couple of years are a blur because I had 3 series of ECT treatments. I felt a little better sometimes and then got worse again. I re-enrolled in school a couple times and then dropped out again. I was hospitalized 6 times, tried about 8 or 9 different medications in various combinations with some temporary success, and was in 2 day treatment programs and 3 DBT programs. I kept using extreme self-injury to cope and once I purposefully overdosed on a medication. After all of that I think that if I can recover, there’s hope for anyone.

Now comes the happy part. At some point I finally found a medication and dosage that lessened my depression to the point where I had the energy to really try to get better. I was a very frustrating client for my treatment providers, and my family, because for a long time it seemed like no matter what I just kept getting worse. But even as I argued with them that I would never get better and they should give me permission to die, I was listening to what they were saying, and I was storing away nuggets of wisdom, insight, and advice from all the people that tried to help me, and when my depression was finally controlled well-enough by medication that I had the energy and motivation to use coping skills and follow the advice I’d been given, I began my recovery.

So for all of you out there who care about someone who just won’t seem to get better. For all the professionals out there that deal with frustrating clients who won’t follow their treatment plan, who refuse to stop hurting themselves: you are planting seeds of recovery, and those seeds will grow when the conditions are right for that person. You might not be there to see it happen, but your caring and effort are making a difference. I’ve had so many wonderful treatment providers, and I’m going into social work because I hope to make a difference like my therapists and social workers did.

The only negative experiences that I’ve had with professionals were psychiatrists and emergency room staff. The first time I was hospitalized the psychiatrist decided, after talking to me for about 10 minutes, that I had Borderline Personality Disorder. I was a psychology major, so I knew what that meant, and I disagreed. I listed off all the symptoms of BPD that I didn’t have. He wouldn’t consider what I was saying, because he had already made up his mind. When I was discharged the outpatient psychiatrist I was referred to got my paperwork and accepted that diagnosis, and my attempts to convince him otherwise were seen as me being difficult and manipulative, which is what some providers think people with BPD are like. Thankfully I found a different psychiatrist that I’ve seen since then, and he’s wonderful because he really listens and always treats me with respect.

Now, when it comes to emergency room staff, I experienced a lot of really unprofessional treatment from them coming in as a psych patient. One ER doctor, who was very sweet and well-intentioned but completely inappropriate, told me that what I really needed was to find a good Baptist church, one that really focused on the word of the bible. Much more commonly I’ve had doctors or nurses be very angry with me, I could see it in their faces: pursing their lips, barking orders at me, or lecturing me, which really didn’t help. I felt like they hated me, and that I must be a horrible person, which only made me want to hurt myself more. And I understand that it must be really hard as a doctor or nurse to see someone come in after intentionally hurting themselves and have to help that person. I think that if ER staff were better trained about mental illness and especially about what motivates people to attempt suicide or harm themselves, they would be a lot less distressed when they encounter these patients, and patients with mental illness would be treated with the respect and professionalism that they deserve.

I am happy to say that I have been in recovery now for almost 2 years. What being in recovery means to me is that I’m able to participate fully in life. I can go to school, I can work, I can have fun with my friends, and I can help others. I still have symptoms sometimes, especially during the winter when my depression usually gets worse, but I use healthy coping skills to get through it.

What has really helped me stay in recovery is the sense of purpose and meaning that I get from helping others. One of the first things I did when I was starting to feel better is I had an internship at the Rape and Sexual Abuse Center in Minneapolis. I did phone intakes and crisis counseling, and I realized that I was good at it. I started to see myself as someone who could be competent and helpful, and I loved talking to people. It boosted my self-esteem and confidence, and it especially helped me kick the habit of cutting, because every time I had a moment of weakness where I was tempted to use self-injury to cope, I thought about how I wanted to be a social worker, a professional, and I wanted to live up to that image that I had of what that meant: of competence and stability and compassion, even compassion for myself.

Right now I co-facilitate a group for teenagers with mental illness through NAMI-MN, and one of the things I’ve heard from a lot of these youth is that they don’t think that they can get married, or go to college, or work, or have a family, all because they have mental illness. Because they don’t know anyone with severe mental illness who has done those things. They only know about the homeless or violent mentally ill people that they see on TV shows. They are also aware of some of the celebrities that have experienced mental illness, but it’s hard for an average teenager to realistically imagine themselves being like a famous singer or actor. They need regular, average role models too.

One of the times I was hospitalized I was telling the psychiatric nurse who was doing my intake about how much worse my depression usually got during the winter, and she said “oh, yeah, I’ve got that seasonal affective disorder too. Have you tried using a light box, it really helps me.” And I was blown away that here was a woman who had a job and seemed normal, and she lived with depression, and she could mention it with no shame, like it was no big deal, just something that she lived with. That was a very hopeful moment for me, it really stuck with me and helped me believe that I could be like that too.

Now I’m well enough that I could call myself “normal” but I don’t want to. I find it empowering to describe myself as someone in recovery and as someone who lives with depression, both because I put a lot of effort into staying well, and because I want society to see that people with mental illness, even severe and chronic mental illness, can recover and can live normal, fulfilling lives.