Charlene Sunkel has been living with schizophrenia since it was triggered in early adulthood at the age of 19. Now, 40 years old, and an accomplished spokeswoman for mental health, Charlene is living proof that you can live a fulfilling and independent life with a mental illness. “I’ve been living with schizophrenia since 1991. In the beginning it was rough…It took me 9 years to find the right combination of medication. The side-effects are not nice, like the dry mouth and the weight gain, but you have to get on with it.” Charlene is the awareness, advocacy and communications officer for the Central Gauteng Mental Health Society (CGMHS). Dedicating her life to educating herself and others on the reality of mental illness, she says schizophrenia is not a death sentence and the perception that people with mental illness are useless is not true. Speaking from experience, Charlene knows the challenges of mental health care and the effects of stigma, which makes her advocacy even more powerful. In the past, treatment of schizophrenia focused on controlling the illness with medication, resulting in patients being hospitalised indefinitely. But now the focus has shifted to managing the illness and getting patients reintegrated into society. Medication is still necessary but it is not disabling. Besides the medication, Charlene says “you need support, you need to believe in yourself and you need to be given opportunities.” Remembering the time when schizophrenia started to take its hold, Charlene recalls how scary and confusing it was because the ‘hallucinations’ were so real. “I would hear messages form the radio and was paranoid people were watching me and search my place for hidden cameras. You also often turn the paranoia to the people closest to you.”
It is courageous to seek help and get treatment
The voices she would hear were very critical, “you are stupid; you’re worthless; people are going to steal your thoughts”. Even the dead started to make their voices heard. This was when Charlene realised something was very wrong and turned to professionals for help. “I don’t hear voices anymore. If I get stressed it can trigger the voices but I know it’s not real. I had moments where I thought I was fine and the others were insane. There is that shame and that makes it difficult to admit and accept that you have a mental illness.” Stepping stones In 2006 Charlene was given the chance to start her advocacy for mental health with the CGMHS. The organisation has a psychosocial rehab centre where Charlene spent two years being treated. “Thanks to that I am where I am today. You need a stepping phase between hospitalisation and reintegrating into society. And this was my stepping stone.” The earlier you are treated the better your prognosis; the better chance you have of returning to your previous level of functioning. “It is courageous to seek help and get treatment. Take your medication. People often stop medication because of the side effects. Especially the weight gain,” adds Charlene.
When Charlene does motivational speaking she encourages mentally ill patients to develop a structure so they do not waste their time by lying in bed all day. “I would write notes and chores for myself. Go for a walk, do washing etc. If it was not for that structure I would not have been able to adapt to a normal working schedule.” She also uses theatre and film in her advocacy with the aim to destigmatise mental illness. She recently produced a powerful play Two Beds: Madness Revealed which looks at the story of two mentally-ill patients brought together in the same hospital room. Winning numerous awards, her work as an advocate and playwright has not gone unrecognised, especially by Inseta and the South African Federation of Mental Health. Most recently, she won the theatre production award for innovative programme in the field of psychiatry for 2012. But there is still so much more work that needs to be done for Charlene. She wants to contribute more to mental health and reach those affected to start believing in themselves and not to bow down to discrimination. Even though there has been progress in understanding schizophrenia, stigma still hangs heavy in the air. It might never go away completely but through inspiring women like Charlene, more people are opening up their minds to the realities of mental illness and not following age old myths.
– By Tanja Bencun, feature writer
