Elizabeth first noticed she was a bit different from other people when she was nine years old. She was petrified of swallowing her own spit. She was convinced that if she swallowed it, something bad would happen, especially to her parents, and that it would be her fault.
The severity of her symptoms waxed and waned. There were times when she felt fine, but the fears got worse when she went to boarding school at the age of 15.
“I was convinced that I'd get a disease – from everything. I was too scared to touch people and would become extremely anxious if someone touched me,” said Elizabeth.
She became obsessed with cleanliness, so much so that the skin on her hands would tear due to her continual handwashing.
Going to the toilet became very time-consuming: she had to spend up to 30 minutes sterilising the toilet before urinating as she feared being infected with HIV.
She would shower at 2 am because that allowed her enough time to sterilise the shower before and after using it.
“I knew this didn’t make sense, that it was stupid, but I couldn’t stop feeling that way. I was convinced that I had Aids, but at the same time I knew that I was HIV-negative. What a strange contradiction to live with. What a strange existence.”
She lived in fear and her mind raced with a thousand thoughts at a time.
“I so longed to hug my mother, but I couldn’t. What if I infected her? What if she had to die? I had the knowledge of how one can infect someone, but what if the experts were wrong? It would be my fault. My mum would die and I would be to blame.”
Obsessions and compulsions in many forms
“I was going through puberty, so I started having sexual thoughts. When I was 16, I thought I had sex with my teacher. No, I didn’t, but OCD sometimes makes you doubt what actually did or didn’t happen.
Sexual thoughts are common during adolescence, but if you have so many intrusive and time-consuming obsessions, you feel so very ashamed about harbouring such thoughts.”
She also developed an obsession with safety and possible harm: she worried constantly about whether she had locked the door when she left home, and would return up to 12 times in order to check.
“My OCD took up so much of my energy and time. I wasn’t able to do much more than my schoolwork. The illness makes you very lonely. This is also very dangerous because you have more time for your mind to wander. Because I didn't speak to anyone, I never had the opportunity to tell anyone that I felt that the world was falling apart and fragmenting around me.”
She became convinced God didn’t love her. She was convinced that she would go to hell and suffer forever. Mental compulsions of reciting prayers made her feel better.
Elizabeth also developed counting compulsions. Whenever she had “bad thoughts”, she would try to counteract them by counting to 60. Only then would her anxiety disappear (even if only for a short while).
What do the experts say?
“As illustrated by Elizabeth's story, the symptoms used to define OCD are diverse and include a range of obsessions and compulsions,” says Prof Christine Lochner, psychologist and researcher at the Medical Research Council's Anxiety and Stress Disorders Unit in Cape Town.
The predominant symptoms in OCD have been well documented and include:
- concerns about contamination or illness, along with compulsive cleaning or washing
- obsessive doubt, along with checking rituals
- concerns about, and compulsions regarding, symmetry, orderliness, and numbers
- hoarding/collecting rituals
- obsessional slowness (spending an extraordinarily long time to complete routine daily tasks)
Elizabeth’s compulsions and rituals, such as checking and washing, were an attempt to reduce or neutralise the anxiety and discomfort created by her obsessive thoughts and intrusive images.
“She also had more abstract symptoms, such as having to pray over and over to get rid of blasphemous thoughts or suffering from intrusive sexual thoughts.
“In addition to obsessions and compulsions, people with OCD may exhibit avoidance behaviours. For example, the person with contamination fears may simply stay indoors rather than risk going outdoors, feel contaminated, and then having to spend hours cleaning and washing. Other people with OCD display obsessional slowness.”
Elizabeth obtained a degree in economics. This didn't come easily though. Her time-consuming obsessions and compulsions continued, once again forcing her to become a recluse.
“Even though I did well academically, I know I could've done better but there was just too much rubbish in my head.
“Because I felt guilty of having sexual thoughts and because of my fear of STIs, it made it almost impossible for me to have a relationship.”
Elizabeth stayed in a university residence, where again showering and going to the toilet would take up much of her time.
She moved back home, to a family who was in turmoil and always arguing.
“One night, I had a dream of hurting one of my family members. Because I was convinced that I would cause someone harm, I became deeply depressed. I prayed to God to take my life. I so wished never to wake up again.”
Major depression is the most common comorbid condition in OCD. Elizabeth seldom slept, bathed or ate. After a couple of months, she was forced to seek help. By then she had become very frail and this 1.58 m-tall woman weighed only 37 kg.
“I realised that I needed help – I couldn't carry on like this. Despite my despair, there was a little thing inside me which told me to fight.”
Lack of support
She spoke to her parents and asked to see a doctor. Her parents told her just to forget about everything and said that she would end up in an institution if she spoke to anyone about this.
Elizabeth's mother has OCD, but does not acknowledge it and has never sought treatment.
“The fact that her mother had OCD may have made Elizabeth more vulnerable to developing this condition,” says Lochner.
“There is increasing evidence that OCD may be inherited, i.e. that there is a role for genetics in the development of this condition. Family and twin studies indicate that OCD is somewhat more common in relatives of people with OCD than in the general population.”
Things changed when Elizabeth visited her doctor about what she thought was low blood sugar. Her doctor diagnosed depression instead and prescribed antidepressants.
“At first, I refused to take antidepressants. I did not want to believe that I had a mental problem. I was not going to let this get to me. I was not a bad person.”
After a while, she decided to see a psychologist and once again broached the subject with her parents.
“They wouldn't let me see a therapist. They refused to believe that something was wrong - I was perfect in their eyes. They were scared of the consequences, probably out of fear of stigma. It was only when I insisted on seeking help that they agreed. ”
She told the psychologist about the obsessions, compulsions and depression that had ruled her life.
“He was amazing. In the next session he took out a pamphlet on OCD. I read it and cried. Now I finally had an answer. I thought: 'oh my God, I'm not crazy, evil or abnormal'. I could now put a name to my illness.”
Diagnosis time delay
It is not unusual that it took that many years for Elizabeth to be diagnosed.
“OCD has been described as a 'secretive illness' and therefore tends to be under-diagnosed,” says Lochner.
“Because of the stigma of mental illness, people like Elizabeth and her mother may hide or deny the impact of symptoms as long as they can and avoid seeking professional help. In some cases, it even takes 17 years before the person seeks professional help.”
Elizabeth's psychologist urged her to consult a psychiatrist but her parents again refused.
“'Psychiatrists are for people who are crazy,' they would say. 'You are weak. It is because you don't pray enough. Just stop thinking about this.'”
Says Lochner: “Her parents’ reaction illustrates the stigma that some people still attribute to mental illness. It is this shocking lack of awareness, knowledge and insight that often prevents people from seeking and getting the help that they need.”
She discovered the number of the South African Depression and Anxiety Group (SADAG) and asked one of the counsellors to speak to her mother. (SADAG offers telephonic support, counselling and referral to mental health professionals and support groups across the country.)
It was only then that her mother started to accept Elizabeth's illness and allowed her to take antidepressants.
Avenues of help
“Seeking accurate diagnosis and treatment for mental health problems such as OCD is not a luxury, it is a necessity. Patients with OCD can be helped to lead better lives and to increase their quality of life,” says Lochner.
Prof Soraya Seedat, a psychiatrist and co-director of the Unit on Anxiety and Stress Disorders agrees: “OCD responds preferentially to a class of antidepressant medications known as serotonin reuptake inhibitors (SRIs) such as fluoxetine and sertraline.
“These antidepressants are effective in about 60% of people with OCD. It is usually treated with much higher doses of these antidepressants than those used for treating depression or other anxiety disorders, as there is some evidence to show that the response is better at higher doses. Response to treatment is not usually as fast as it is for depression. It may take at least eight to 12 weeks to experience improvement, while in depression improvement is usually seen within four to six.
“Cognitive-behavioural therapy is often used as a first option, especially in people who have mild to moderate OCD and is probably as effective as SRIs. In Elizabeth’s case, she has co-existing depression and this is best treated aggressively with both an SRI and CBT.”
‘My best year’
Elizabeth decided to go back to university because she needed to be alone. She saw a psychologist during that year who gradually taught her how to adopt healthy coping mechanisms.
“That was the best year up until that point. I knew what my illness was all about. I took responsibility to make myself better – I not only took antidepressants, but also read a lot about OCD and started to exercise, follow a healthy diet and take vitamins. I really think all of these are important in getting and staying well.”
She has since stopped taking antidepressants, but still continues to adopt the other methods to keep herself well.
Elizabeth landed a job at a prestigious international company where she still works. Her episodes have gradually become shorter and the remission periods longer. Today she is in a stable relationship and has close friends who support her.
“No one should go through it alone; that's why I've disclosed my condition to some. I have also joined an online support group. But I've never told anyone at work. I don't want them to think of me as 'crazy' or as 'the girl with OCD'.”
“For so long I let OCD define me. I now know that I can contain the illness and let it only be a small part of my life. Yes, I sometimes fear that it will come back, but I now look forward to my future.”
However, the scars of her illness will never go away. It still hurts when she thinks back to how OCD once ruled her life. Her parents now realise she isn't to blame and that she had been trying her best to find a solution.
Elizabeth broke down in tears when she said: “One of the nicest things someone has ever said to me was when my father told me that he admires my courage in not giving up when they told me to stop."
“If one person could read this story and think: ‘I’m going to fight; I'm not going to go through life feeling numb,’ I would be glad. I want this to be a story of hope.”
Article by clinical psychologist Ilse Pauw in a series on mental health, reviewed by Prof Soraya Seedat and Prof Christine Lochne
Contact the South African Depression and Anxiety Support Group (SADAG) between 8am to 8pm any day of the week on 011 262 6396 or 0800 20 50 26. Visit their website: www.sadag.co.za.
Lochner on the causes of OCD
Ilse Pauw's fellowship article on Sue who lives with Bipolar Mood Disorder