My husband has been unwell with pneumonia for what feels like way too long for him and me, however thankfully he is now on the mend.
This prompted me to share a modified version of an article I wrote many years ago about my experience of being both a doctor and a mother of a child with a chronic health condition.
It appeared in ‘Australian Doctor’, a weekly national magazine for General Practitioners. Although it was published on 23/3/2001, the message is still relevant today.
Blurred Roles: We Care Too, by Dr Bambi Ward.
In October 2000 I felt as though my world was shattered when my nine-year-old son followed in his father’s footsteps. After several months of fatigue and pallor, my son was diagnosed with coeliac disease.
Blood tests for anti-endomysial and anti-transglutaminase antibodies were strongly positive, and a small bowel biopsy confirmed the condition.
I had wanted to defer the inevitable investigations but the Paediatric gastroenterologist emphasised the importance of making a diagnosis. The doctor in me agreed with this approach;however,the mother in me wanted to deny the whole thing. The possibility of having to deprive him of food he loved for the rest of his life was too distressing for me to contemplate.
A few days after the blood test results came through, I hesitantly telephoned a support group. I was told the diagnosis ‘wasn’t the end of the world’ and if the biopsy was positive my son would feel much better once he went on a gluten-free diet.
This advice came from an adult with coeliac disease who didn’t know what it was like to have a child with the condition.
Her well meaning comments were not helpful. I needed someone to acknowledge my feelings of distress.
It took a while to find a colleague who was able to really listen to me. Pouring out my feelings allowed me to face my son’s forthcoming small bowel biopsy with renewed strength.
The paediatric gastroenterologist allowed my husband and I into the theatre, to hold our son’s hand until he was anaesthetized, and to be with him in recovery when he awoke.This was a great comfort to all of us.
Soon after the biopsy, the doctor walked over to where our son lay sleeping. He told us that the biopsy confirmed the diagnosis of coeliac disease — microscopic examination of his villi showed them to be flat. I wished I’d been asked to sit down before being told the news.
I gripped my son’s bedrails tightly and tried to ask some medical questions in a professional manner. Inside I was screaming, ‘No, no, no!!’, but I held my emotions in check so I could be strong for our son.
Not long afterwards, our son woke up. My husband and I had prepared our son that coeliac disease was a likely possibility. He asked me if he had “it” so I answered him truthfully. I would have preferred the doctor to have broken the news to him but this was not to be.
After breaking the news to him, I was both surprised and amazed at his reaction.
He was relieved about having coeliac disease because he could now do something to improve his well-being. I think having a father with the same condition and whose
attitude toward coeliac disease has been both positive and accepting was extremely helpful.
Out of the three of us, it was me — the mother/doctor — who found it hardest to accept the diagnosis.
I sometimes wish I didn’t have the medical knowledge I do. It can increase one’s distress if a loved one is facing the diagnosis of a chronic illness. I also wish I had been treated more as a mother than a doctor.
I would have liked someone to ask me how I was feeling. None of the health professionals involved did. Too often carers’ feelings are ignored. Maybe more so if the carers are doctors, as many have been taught to be strong and to not show their feelings.
Interesting link of the week: Are you interested in Stonehenge and Indigenous culture? If so, click here.
Inspiring link of the week: