Treatment Resistant Depression - Misdiagnosed for Years

My mood disorder first emerged in my late teens. At age 18, I left my home town in New Zealand and moved to the city to pursue a university degree in science. I had been academic all through high school and I had no problem with studying.

However, after living in the same house my entire life sheltered by my parents by the cruel, harsh world, I was finding flatting with other people hard to adjust to. I was emotionally and socially immature and not experienced at dealing with manipulative and malicious individuals. I was also very shy and found it hard to stand up against forceful individuals.

I had been raised to believe in God and go to church, and my mother had instructed me to hunt out Christian groups, which I did. I spent a lot of my time with my Christian friends and was pressured to take on responsibilities, as I did not know how to say 'no'.

Adding to my confusion, I realised I had feelings for a male friend, but didn't know how to act on it. I'd never felt that way about someone before and I definitely wasn't going to make the first move. I was also terrified of being intimate with anyone.

I returned home for university holidays. I was cracking apart - my mind refused to function. I was crying uncontrollably. I was very scared. I lost a dramatic amount of weight in the space of a few days. I had always been slim, but now my bones were protruding. I looked anorexic, but I was not starving myself - it was all from nervous stress.

I sat on the lawn at my parents house in a state of panic - I was totally overwhelmed and couldn't think straight. Mum dragged me off to the doctor and he wrote me a medical certificate to withdraw from my most difficult papers at university. I withdrew from the roles I had been pressured into in my church circles.

Mum said I was suffering from a nervous breakdown. I actually despise that term and prefer the term 'burnout'. I was worn out and completely depleted emotionally, mentally, spiritually and physically. I returned to university, not smiling anymore, my face looking pale and grey. I took a few months off university and did the bare minimum.

I felt like a complete failure - the university buildings seemed to loom down on me screaming FAILURE. My romantic interest withdrew. Friends abandoned me. People in my church circles rejected me. I was confused, heart-wrenchingly lonely and was living in hell. I curled up in the fetal position on the floor of my room, sobbing until no more tears flowed and I felt numb. I was in a deep, dark pit and didn't know the way out. I didn't know that what I was suffering from was clinical depression. When I confided in someone that I was suicidal, they told me if I killed myself I would go straight to hell - not exactly the most helpful thing to tell someone in distress.

I believe Asperger's and Celiac Disease (an autoimmune disease that went undiagnosed for over 15 years) were major factors in my burnout.

Back at university, I managed to scrape though the rest of the year doing the bare minimum. My brain felt full of cotton wool and I could not longer concentrate. I had just two papers left to complete my degree.

I was home for the holidays, completely exhausted. My parents offered to pay for me to go to an art camp on Great Barrier Island. I accepted. It was a week of painting with professional artists. I enjoyed reconnecting with my artistic side - I need the balance of analytical/scientific and creative/artisitc and my life was out of balance. One day, I didn't feel like painting and went with a group to the beach. It was an unoccupied beach on the other side of the Island - a truly beautiful place. I walked down the beach talking to a girl who was recovering from anorexia - I could identify with a lot of her pain.

I played piano at the camp - improvising, pouring out my feelings through the instrument - through music and writing I was able to connect with my feelings, which were often 'stuck'. I was aware of someone's presence behind me. When I stopped and turned around, one of the professional artists was sitting there, mesmorised. He said I had a gift and was a truly creative individual.

Back home for the rest of the university holidays, I was fighting with my mother a lot - so much so that I knew I had to leave home for good. I had a job lined up - they were impressed with my academic record. I was to work and finish my studies part-time. Within weeks I was falling apart again.

I phoned my parents at some insane hour - about 4:30 am. My father answered and I was a mess. I told him I was quitting work and university. He sounded half-asleep and had difficulty comprehending. Later my parents phoned me and begged me to come home. I refused. Their preaching at me made things worse. I preferred to stay in my flat.

I was was able to get a sickness benefit and spent the rest of the year trying to recover - sitting by the river for hours, writing poetry and pouring out my pain on the pages. I poured out my pain on the piano, playing melancholic creations in a minor key. I revisited my art, doing abstract paintings that I destroyed afterwards. I also ended up destroying my poetry, as I was too ashamed if anyone found it and read it.

Towards the end of the year, I had been reading self-help books. A position came up for a Laboratory Technician in a chemical factory for a near-graduate. I was tired of telling people I almost had a degree. Only two papers to go. My heart was no longer in it, but being a lot like my father, was determined to finish what I started. I got the job and worked full-time and completed my studies part-time.

I had given up on guys. At that workplace, the chemical mixer asked me out. He wasn't exactly what I had in mind, but he seemed friendly enough, so I thought, "why not?". He touched my hand on our date, and it felt electrifying. I had never experienced that before. We became infatuated with each other. He wore his heart on his sleeve. I really liked him, but felt smothered and confused being in an intimate relationship for the first time ever. I tried to break up with him, but he refused to let me go. Despite us not realising why I had crazy moods, he was not put off. We got engaged and married.

A few weeks after our wedding, I needed surgery for impacted wisdom teeth. The surgery knocked me around and my boss asked me if I was unhappy - I had been managing to conceal my pain just beneath the surface. I burst into tears. I found it embarrassing having my emotions out of control and on display - when I am well, my emotions are kept to myself.

I had been also suffering from unexplained aches and pains and frequent infections - signs my immune system was taking a hammering. Doctors just keep prescribing antibiotics and said I was a hypochondriac.

I was crying a lot at home, for no apparent reason. I said to my husband, "This is crazy. I'm a new bride. I should be happy. I don't know what's wrong with me!".

My husband said, "I'm sick of this. You're coming to my doctor. We're going to get this sorted out once and for all!" The next day, we visited my husband's doctor.

The doctor told me that I was suffering from clinical depression and had been for at least three years. He instructed me to take a month of work to rest and prescribed antidepressants. The antidepressants took a really long time to lift my mood a bit. I was able to cope a lot better and we moved to a new city to start a new life.

I weaned off the antidepressant when my new doctor deemed me to be "well", even though I was never free of the brain fog and was still not able to handle stress very well. I was targeted by bullies in the workplace which was hugely stressful.

I had surgery that was extremely painful to recover from. I was very sick after the surgery, perhaps from an adverse reaction to the medication. I was very ill and could have died from complications. The horrific stress took a toll on my body and I suffered a relapse. I tried to push my husband away - but he was determined to stick with me. Fortunately, we recognised the signs of depression and I resumed medication and we had counselling.

I made an unwise decision to become a secondary school teacher. I survived Teacher's College, but not teaching. In my second year of teaching, I started getting panic attacks and quit. Another relapse. More drugs. But the drugs were not as effective. They tried other drugs. Some of them made me worse. Some dangerously lowered my blood pressure. I felt I would fall into a sleep and never wake up. It was a real possibility.

I had consistently failed in my career, so I finally gave into my husband's desire to have a baby. I was very sick and more depressed and exhausted than ever while pregnant. I had several complications in pregnancy, including having to be hospitalised for an obstructed kidney. Breast-feeding was exhausting because my baby would throw up and want more, so I was constantly painfully engorged. My baby screamed constantly. I would later learn he was on the autistic spectrum.

My body was in pain constantly - my joints and muscles ached and even to touch my skin hurt. My doctor told me it was "just" post-natal depression and "all in my head" and sent me back to the psychiatrist. More medications with dangerous side-effects. One made me feel suicidal - it's interesting to note that now antidepressants often carry warning stickers: "May cause depression and suicide."

One particularly disastrous drug change coincided with starting a new job. The drug made me "stoned" and then "wired" and anxious. I had a bully for a boss and I became so anxious I felt sick being near her. I ended up quitting that job, we had to sell our house because we couldn't afford the mortgage and then several months later worked out the drug was doing much more harm than good.

Doctors were baffled at how they failed to cure me. I was labelled with treatment resistant depression and put forward for a particularly heavy duty antidepressant. After I got over the side effects of nausea, being wobbly on my feet and alternating feeling wired and having sleep crashes, I started feeling better. Finally a medication that agreed with me.

We decided to start a new life in Australia. When we announced we were moving to Australia, my husband's sister disowned us, for reasons that we do not understand. Our relationship with my husband's parents have been strained since, as they took their daughter's side.

The anti-depressants were no longer effective and I was more exhausted than ever. I was collapsing from low blood pressure and a golf-ball sized lump came up in my neck. I felt so weak and awful. Was I dying?

The lump in my neck was thyroid cysts from thyroid autoimmune disease. I was then diagnosed as having Celiac Disease, an autoimmune disease that requires strict avoidance of gluten in the diet. Left untreated, Coeliac Disease can trigger other autoimmune diseases. My symptoms started in my late teens and went untreated for over 15 years. The doctors could not manage the depression because it was a symptom of my illness, not the root cause.

Complicating matters, my son and I also have Asperger's Syndrome, an neurological disorder on the autistic spectrum. My inability to connect well with people socially was a huge stress. Smiling all the time and faking being happy was an exhausting act to keep up. I was socially and emotionally behind my peers growing up, despite being intellectually advanced. The responsibilities of being an adult are still very overwhelming for me. I've had friends and family disown me for no obvious reason and have had repeated difficulty in the workplace.

I recently got fired from my part-time job because I "didn't fit."

I still need to take antidepressants. I probably will for the rest of my life. I manage my conditions on a daily basis, and require a special diet. It's not easy raising a child with special needs, especially with my health issues, but I am grateful my husband is by my side, keeping our family together.

I found Cognitive Behavioural Therapy (CBT) useful. It involved identifying my negative thought patterns which stemmed from my beliefs and then challenging them. At first it was hard to identify what my thoughts were, because I used to think exclusively in pictures (as many people on the autistic spectrum do).

I also figured out that food chemicals in the asprin and ibuprofen families (including salicylates in most fruit), triggered a depressed mood, even when inhaled (perfumes) or rubbed onto my skin (pain-relief gel). Apparently these chemicals block serotonin, a mood neurotransmitter in the brain. My son also experiences mood problems (depression and rage) with these chemicals. When "drugged" like this, unfortunately positive thinking does little to help. It is a matter of waiting until it is eliminated from our bodies. Being very chemical sensitive is another condition that people on the autistic spectrum frequently suffer from.

I had been afraid to have a child in case he inherited a depressive disorder and that I might not be able to cope. My husband reassured me that if he did get depression, we know the symptoms and would deal with it.

I am now managing our difficulties with medication, diet, helpful therapies I've learnt and by shutting out destructive people and welcoming supportive people.

As for God, I consider myself agnostic atheist now - I no longer believe the christian doctrine. I don't fear hell, if hell exists, as I've already been to hell and back. I am definitely more tolerant of differences now and see the shades of grey.

I've observed a depth of character to people that have endured suffering, that people that have not suffered find difficult to comprehend. I focus on what really counts in life and that's not all the superficial possessions most people go for.

 candle stump image by Helga's Lobster Stew