MENTAL HEALTH MATTERS
Living With a Mental Illness
Hi. My name is Wendy Enberg. I live with Major Depressive Disorder, Borderline Personality Disorder and General Anxiety. Triple threat! I used to say that I have this or I am that, but on my journey of recovery, I’ve learned that I’m not a disorder or a name – I am a human being coping the best way she can. We all have a different road to walk and my goal is to share my story in hopes that if someone is listening they might recognize something in themselves and make a choice to work towards a better life that’s worth living.
If you take a look around at the people sitting beside you, think of this statistic. 1 in 4 people will face a mental illness episode in their life. 1 in 4. And sadly, we still feel shame when we talk about mental illness. We still think that people with a mental illness are somehow inferior to the rest of us. We show compassion when someone struggles with a physical illness, yet we question and mock those who have an illness of the mind. I believe it’s fear and brainwashing over the years that we stigmatize mental illness. People who didn’t fit the mold, or act the way society says they should act were often locked away and forgotten. Not much has changed since then other than most of the time they aren’t locked away, but they are certainly forgotten. Swept under the rug. Families embarrassed by the behaviour or actions of their loved ones often reject them. We were left alone to suffer in silence and shame. By talking openly and honestly about my struggles, I’m here to be a voice.
HOW DID I KNOW I HAD A MENTAL ILLNESS?
Finding out you have a mental illness or disorder isn’t easy. It’s not like when you break your leg, there’s pain, you get an x-ray and a cast and in 6 weeks you’re leg is back to normal. Or having a blood test that tells you something’s wrong. No, it certainly wasn’t like that for me. While I can now look back and realize that there were symptoms and signs from a young age of my mental illness, it wasn’t until I had what I call a “Psychotic Break” that I began my journey down the mental health road. It’s a road not clear in it’s direction or smooth in its path. I spent the first couple of years after my break working with my family doctor who’s first decision was to put me on anti-depressants. I also began seeing a therapist, but we were working on my getting through the stresses that were happening in my life at the time and not really examining my mental health.
It wasn’t until I made my first suicide attempt in 2007 that my family doctor finally referred me to a psychiatrist. Even then it was via video link and for 45 minutes only. He readjusted my medications and asked me if I was going to do that again. Of course I said no – by this time I was somewhat lucid and ashamed of what I had done, but they never addressed the underlying causes for my actions. I mean, my life at this time was out of control. My world was chaos – I was in a violent and abusive relationship with the father of my children, my own son was experiencing his own mental health issues, financially I was a mess and I felt like I had no supports at the time. I was struggling to keep it all together – working full time, being a single parent to two children (one with special needs), being in charge of the household and finances, family commitments and abuse – I cracked under the pressure.
My suicide attempt came at a time when I felt like I had nowhere else to turn. My world was a mess and I had very few friends or supports. My family wasn’t being supportive – they all kept telling me to just suck things up, but I kept thinking that there has to be more to life than feeling this way. I was sad, weepy, fearful, anxious, and worried all the time. I had made steps forward during this time – I ended the relationship with the childrens’ father, I had my son placed in a treatment group home for children with severe behaviours, and I was trying to continue to parent my daughter who somehow just kinda got lost in all the shuffle.
I had made a friend who I foolishly trusted shortly after I broke things off with my ex. I was vulnerable at this time and needed someone who could listen to me and offer no judgment. I trusted her with some of my darkest fears and secrets and I thought I had a friend. The night of my suicide attempt, I had just found out that this woman was secretly sleeping with my ex and telling him all of the stuff I had shared with her. I felt absolutely betrayed and devastated. That night, I carefully calculated how many pills I had on me and figured that I had enough to do the job. I was alone that night with my daughter and I wrote letters to my parents and my children, apologizing for my choice but saying goodbye. I began to take the pills, slowly and methodically – taking the time to think about it before I put them in my mouth. They say that sometimes your body takes over and the survival instinct kicks in, and mine did that night. I called my mother at midnight, asking her to stop at my home in the morning – the intent being that I wanted her to find me – not my daughter. She must have heard something in my voice because it wasn’t long after that my ex and my friend showed up at my door…..taking the pills away as I was trying to swallow them. My mom arrived shortly afterwards and arranged for the ambulance to take her and I to the ER. I don’t remember anything after that, but my mom did tell me that it was absolutely devastating for her to watch me lying there helpless as they tried to save my life.
I moved to the city shortly after this – away from the small town that knew all my business, away from my ex and his girlfriend, and most of all close to services. My son was residing in the city and my intention was to work on transitioning him home. He was diagnosed with Oppositional Defiant Disorder, ADHD and a non-verbal learning disability. He had since moved into Severe Conduct Disorder and at the time, I was unable to successfully parent him. I had my own mental health issues happening at the time and I could not provide the high level of supervision and direction that he needed. His father offered to take custody of him, a move that I opposed, however at the time the Department felt that our son would be ok with his father. That’s another story for another time.
I wasn’t seeing a therapist when I first moved to Edmonton, and I was feeling pretty stable after I had made the decision to not have my son come live with me. I had been off on a medical leave during this time, and I wanted to return to work. I began working in the Edmonton office in training and there I found a niche that I fit right into. I was able to push all my emotions aside and focus on work and there I became the stellar employee – new ideas, creative, hard working, reliable and dedicated. I thought I was doing ok and chalked up my suicide attempt to being overly stressed and tried to move on in my life.
I met my husband online and it was a whirlwind relationship, with me moving in with him within a week of meeting. I uprooted my daughter and moved her to a new community again and expected her to be as happy as I was. (instable and impulsive relationships are an indicator) Well, eleven year old girls who have come from a background of trauma and abuse (her brother used to abuse her) and who has a mother who hasn’t yet figured out she mentally ill does not make for good mix. Thank god my husband is a kind, loving and compassionate man who loves me unconditionally, because there are some days I’m sure he asked himself what the hell had he gotten himself into?
Parent-Teen conflicts began almost immediately between my daughter and I and her behaviours were escalating out of control. She would sneak out, drink, do drugs, and run off. She absolutely refused to go to school and in fact would hardly leave her room. When she did she was rude and disrespectful and hateful. I began to feel myself slipping off the rails of stability when this was going on and once again, despite having a loving husband, I made the choice to once again try to end my life. Enter the police, and ambulance and off to the psychiatric ward I went. They did have to commit me this time as I was adamant that once I was released I was going to finish the job. With the help of a social worker, I was able to arrange for my daughter to live somewhere else while I was undergoing treatment based on the recommendation from my new psychiatrist. This was the beginning of my recovery. September 2008 was my new beginning.
Five years and a lot of therapy later, I stand before you today. Ready to share what worked and what didn’t work for me. Ready to let you know how it really feels to have voices and thoughts in your head that wont’ go away. How it feels to believe that you are worth nothing and that nobody loves you. And worst of all, having to be ashamed to say I have an illness of the mind.
Making My Way Through the Maze
Once I had moved to Edmonton, I assumed that services would be easy to find and supports would just fall into place. I had always been resourceful and was learning to advocate for myself. I knew that there was something going on with me that wasn’t in my control. I couldn’t understand why I was making the same choices over and over and repeating patterns of unhealthy behaviour. I used to feel like I was addicted to chaos and stress. The constant rush of adrenalin when under extreme duress was like a drug rushing through my body. There were times I felt so capable and in control and then things would fall apart and I began to believe that my grip on reality was fading.
As I said, I moved to Edmonton in 2007. I accessed therapy services through my employer and with the assistance of a family support worker who was helping me with my son. In therapy I was often highly emotional and would often feel absolutely drained after a session, weak from sobbing and tired from the pain. Although it was feeling good for me to talk about some of the stressors in my life, I was continuing with my negative coping skills. I would often detach from the world around me and I withdrew from things I used to enjoy doing. I was barely managing to parent my daughter and I had become involved in a relationship with someone who themselves was mentally ill. He had even attempted suicide and it was my daughter who found him (she was 11 at the time) and had to call 911. I was so messed up inside that I didn’t stop to consider what my daughter had just gone through and chose instead to focus on my partner at the time. I spent a lot of time helping him try to access services he needed and neglected myself.
I was also under considerable financial stress at this time. I was trying to live on my disability income and I hadn’t quite figured out that my reckless spending was contributing so much to my struggles to pay my bills. After struggling for months to maintain the three bedroom home I had rented, I made the decision to move my daughter and I to a cheaper basement suite. I again uprooted her, without giving any consideration to what that may do to her. I allowed the suicidal guy to rent a room off of me in the new place as a way to save money, but soon I had to ask him to leave as his depressive behaviour and anti-social skills were too much for my daughter and I to bear any longer. I had let him stay for so long because I felt sorry for him and the nurturer and caretaker in me didn’t have the heart to kick him out. He had already burned through all of his family support and I felt horrible guilt in turning him away.
This perfect storm was building up inside of me when I met my future husband. As I mentioned, I had moved my daughter and I in with him in a matter of days and it was shortly after the honeymoon period )of about 3 months) that things started to fall apart. First my daughter absolutely refused to go to school. She would throw things at me, rage, scream and cry until I would burst into tears myself. This would go on every morning as I was trying to get myself out the door. My husband couldn’t understand at the time – he had never had any children and I certainly didn’t have much of a handle on parenting. I could barely take care of myself.
In September of 2008, my husband and I had had another argument and in frustration, he told me that it was over between us. In that frantic moment of abandonment, I felt that I had nowhere else to turn. Even though I loved my daughter I felt detached from her with all of the fighting and struggling we were doing. I couldn’t see the part I had played in our battle and I just wanted to end my pain. I felt like I absolutely could not go on if the relationship with my husband ended. I was yet again a failure in life and I wanted to die. I again chose to take an overdose of pills along with alcohol and my husband had no choice but to call 911. The police came and later an ambulance and I was taken to the Royal Alex Hospital. I woke up somewhat coherent hours later and when I indicated that I would make another attempt at taking my life, they had me held for 72 hours. I was transferred to the in-patient ward at the Grey Nuns Hospital.
I spent the first week there sleeping and practically in a catonic state. I finally saw a psychiatrist in person, who at that time diagnosed me with Major Depressive Disorder. I felt a sense of relief – finally, someone else could see that I wasn’t making these choices in my life on purpose. Feeling relieved that I had a diagnosis, I felt that I could effectively manage to live back at home and attend the PPHP program – I travelled every day from Morinville to Millwoods to participate in this program and after it’s completion, I felt once again capable and confident that I was in control. My daughter had gone to live with a family friend during this time that I was hospitalized and taking the program at the PPHP. I needed to focus on my recovery and felt that this was the best decision for her. Mark supported me in my illness and stood by me while I began my recovery journey. After completion of the PPHP, I felt confident enough to return to my job and have my daughter return home. I was on medication for depression and I had taken therapy. I was good.
The support that I received while taking the PPHP was critical. I had to be accountable for attending the program and if I was feeling emotionally overloaded or there was an issue with my behaviour, the team of mental health workers would help me through it. I felt supported and I felt like I had finally found a kinship with people who were also struggling. I never felt like I belonged until I spent time in the hospital and in the first PPHP program. But then, when the program was done, I felt dismissed. The gap that often happens to people with mental illness is that when they stabilize the supports go away. And that’s when we need them the most – when we are in a healthy place we can learn and put the skills to use but we need support to keep doing it. We often don’t get much feedback from our loved ones – they are usually struggling to accept that we are ill and cope with our behaviours and we start to spin, wondering if what we are doing is working. Change is difficult for all people and when we are in the process of changing our way of thinking, those around us may react in a negative way at times. Without having a support group to attend consistently, I found myself again detaching and feeling empty.
I ended up back in the Grey Nuns Hospital with suicidal thoughts in September of 2010. This time the psych decided to keep me for a month to really get a handle on what was happening with me and to take the time to do this slow. During my hospitaliztion I participated in the PHP program, with various OT staff. My favorite during this time was when we could go to the art room and try anything we wanted to do. It was about trying to find a soothing activity that we could do that we could use for relaxation. I followed all the rules and at the end of the month I returned home, refreshed and ready to fight this dragon again.
I was attending a group session with a psychiatrist that I felt good about attending, however I was asked to leave the group for being disruptive and not following the rules. The people in this group were much further along in their therapy and I think it was identified by the psyhicatrist that I needed different therapy, but it was never really explained to me that way. The psychiatrist gave me the feeling that I was bad and should be ashamed and I started to believe that I was never going to get better. I felt like it was my fault that I kept repeating the same things over and over and over. However, the one thing this psychiatrist did do that was beneficial was he referred me to the psychiatric program at the Royal Alex. I met Dr. Hibberd (he’s one of my heros in my journey) and he placed me in an “Advanced Skills’ program that ran for 12 weeks and met once a week. It was at this time that I first began to hear the mumblings of Borderline Personality Disorder……I began to research more about this disorder and the more I learned the more things in life made sense to me. I was still working while taking the Advanced Skills program and still I felt like I was in control. \
My life however changes every time I experience a setback in my recovery. I have memory loss, confusion and still have a chronic feeling of emptiness inside of me. I have worked off and on since 2006, struggling to be successful at my job, but coming to learn that I no longer fit into the mold of a 9-5 worker as there are often days that the mere thought of getting up and dressed is too overwhelming. I began to suffer from anxiety related to driving in the wintertime and \I would refuse to drive when there was any snow whatsoever. Despite there being no obvious triggers happening with me, I could feel myself losing control again. I once again spoke to my family doctor who referred me to the Primary Care Network where I could begin taking DBT Light.
DBT is changing my life. It makes sense to me and the skills are what I have needed all along. I am almost at the end of the modules and I am a little worried about the fact that there are no ongoing supports offered by the PCN or AHS to help me maintain my recovery. There are always services available when a person is in crisis and that’s wonderful, but we need to figure out ways to stop the crisis from happening in the first place. How do we do this?
1. Education to people about the importance of taking care of your mental health.
2/ Early intervention – have programs in schools that offer support and guidance for mental health issues
3.Removing the stigma from mental illness
4. Engaging those with lived experience to tell their stories and advocate for services.
5. Engage the communities that taking care of their members is an obligation of our society.
6. Increasing supports to the mentally ill
I will say this to you about the system presently in place. Unless you have the ability to articulate yourself to the people on your team, there’s a high likelihood that you are going to struggle unnecessarily. Shame, embarassment and the feeling of being judged are always present in our minds and it’s often difficult for us to even admit to ourselves that there is something wrong, let alone explain it to different therapists, nurses, workers, doctors and family over and over again.
I would recommend that the first person a patient sees when they appear in the ER for treatment of disturbing thoughts is a social worker who can be present while the patient is trying to explain themselves to the team. This person should act as an advocate and information keeper on behalf of the patient and their family. There should be a report shared with the patient of the treatment plan and the outcome. I know that presently this information goes back to the family doctor for them to follow-up, but often we don’t go back to our family doctors and ask for the information. We expect to be told what is happening with us, but the problem is when it is told to us, we may not be lucid or capable of reacting to this information appropriately. That’s why a worker/advocate would be beneficial.
As someone who was capable and articulate, I was able to advocate for myself for the services I needed and I was resourceful in finding programs that were out there for me. This is not e case for many of the patients you serve. They come to the medical world seeking help for their symptoms and to stop the pain and often they are turned away with no follow-up on their care. In the Child & Youth Services world they have whats called Family Enhancement files where there are workers attached to help vulnerable families avoid coming into the Child Protection stream. Parents are often taught skills at this time as a preventative measure and they are supported by various workers and agencies tasked with the job of maintaining families. This same type of program needs to be implemented for Mental Health Patients that are in the community. They should have a social work file opened and they should be followed throughout their treatment and for a period of time after to ensure stability. There should be intake workers that a patient can contact to have their file reopened and services put into place for them as soon as possible to prevent a relapse, or if nothing else perhaps ease some of the behaviours.
Recovery is not an overnight process. I first began treatment in 2006 and today I am still working on managing the symptoms of my illness the best way that I can. It has involved medications, therapies, education and a lot of insight. I have needed the supports of doctors, nurses, mental health workers, therapists and peers. They all play a key role in helping people recover and lead meaningful lives. It takes a community and a society to accept that there are members who are worthy of love and compassion in their struggles and we have to reach out to our neighbours and genuinely care.
I feel that peer support and advocacy are the key to treating Mental Illness. Lived experienced that is shared with others often eases their feelings of being alone. We need to stop feeling ashamed or embarrassed by the fact that we have a mental illness. Yes, we have made mistakes and probably done things that we still haven’t atoned for, but we are good people and we deserve love and care. It shouldn’t hurt to stand up and ask for help, nor should we feel shame.