My son’s friend had occasion to visit the emergency unit of a hospital and when his medical records were reviewed, one of the nurses said; ‘I see you are taking anti-depressants. Maybe these severe pains you are complaining about are all in your head?’
I asked the social worker who ran the support group my husband and I were attending how someone on the medical staff could say something like that. That nurse’s remark was insensitive and hurtful. Our social worker wasn’t sure what to say but promised to draft a letter to that particular hospital and state her feelings on the subject of insensitivity and stigma in a strong manner.
I know a soccer coach who suffers from OCD (obsessive compulsive disorder) and has poor social skills. When his symptoms flare up as they do from time to time, his co-workers taunt him with; ‘Why do you need to stick on those labels in a perfectly straight line? OR, ‘Why does everything have to be so perfect?’ They all know that he is ill and in spite of that, they tease him about time spent in a psychiatric hospital whenever his meds need upgrading. They might think that their teasing is okay, but it is not. It is hurtful, inappropriate and shows their ignorance on the subject.
Our social worker told this young man’s parents at the support group how to help him deal with this kind of taunting. She said he should explain that it is due to his illness and that he cannot help himself.
Many people out there believe that depression and other mental illnesses are a sign of emotional weakness that can be easily ‘fixed.’ The only way this can be changed is by speaking out. Our children have done nothing wrong. All that has happened is that they are the unlucky ones who suffer from a mental illness.
There were people who said the following to our son while he was ill; ”Why don’t you find something to do – a distraction maybe?’’
‘Get busy and stay that way. Why lie around in bed all day?’’
‘Focus on the positive if you want to improve. That always helps.’
‘Snap out of it. Find a job, man. My niece has the same illness as you have and she is working and happy. Schizophrenia does not have to be a life sentence!’
I doubt whether any of the people who said what they said meant any harm. There are many people who suffer from schizophrenia and find the right medication from the start enabling them to hold down a job, partake in some kind of social life, and feel reasonably happy. But there are those who are not that lucky.
The social worker who ran our support group, listened intently to our discussions when we met every two weeks, and then gave her input which I found invaluable. She gave it in a gentle way and by the time I went home, I felt far more hopeful and positive. The other members of the group, including my husband, felt the same way.
On one occasion, she brought a psychiatrist to talk to us and he stressed that the longer this illness is left untreated, the greater the disruption to the patient’s ability to study, work, make friends and interact comfortably with others. The medications taken minimize hallucinations for most patients and help them think more clearly, focus on reality and sleep better. Our social worker gave us to understand that psychosocial treatments should be an important part of the overall treatment. It can improve symptoms as well as quality of life.
I have heard so many people say; ‘I’ll never attend a support group’ or ‘I don’t like that kind of thing.’ Well, I felt the same way, was extremely nervous about going, but agreed to try because watching my son deteriorate had given me a feeling of utter desperation and helplessness. So, when I walked into the first meeting together with my husband, I received a pleasant surprise. About eighteen people were sitting in a semi-circle and when they welcomed us with open arms, I felt a weight lift off my heart. Why? Because every single one of those women and men knew exactly how I was feeling. There were far more women than men but they gave of themselves freely, shared their experiences, and answered our questions to the best of their ability. They became like our extended family, people we could turn to at any time, call inbetween the meetings if we needed advice. Quite often, these parents gave us far more practical advice than any trained professional had done. They actually gave us the tools to carry on and I thank every single one of them from the bottom of my heart. I will write about ‘coping’ in my next blog.
To all the parents of mentally ill children; things have changed since the time when my son was ill. Remember that there is hope out there. Find something you really love doing and go for it. It will make you feel good, even if it’s for a short while.