Article 12 of the United Nations Convention on the Rights of the Child states that every child has the right to freely express her or his views, in all matters affecting her or him, and the subsequent right for those views to be given due weight. Although the Irish state has signed and ratified this document, the rights contained within are often not upheld and children lack the procedural capacity to have them enforced. Sophia’s story highlights how a lack of respect and willingness to listen to the opinions and experiences of children can cause and prolong entirely avoidable situations.

Living with Uncertainty
At the age of 12 Sophia began experiencing physical symptoms which made everyday life extremely hard to manage. She was plagued by chronic nausea, headaches, dizziness, body aches, insomnia and many more unexplained and confusing ailments. Each morning Sophia woke up with the knowledge that she would be facing a day filled with uncertainty, fear and pain. As weeks became months and Sophia’s illness progressed, her symptoms worsened and she was forced to miss out on her schooling. After attending several doctor’s appointments Sophia was no closer to a diagnosis. None of the medical professionals Sophia spoke to could understand why she was experiencing these symptoms and struggled to link them with a physical illness. As a result, they attempted to push Sophia down the psychological route. Although many children today suffer from a variety of mental health issues and illnesses and should be offered psychological and cognitive treatments to aid them in their recoveries, Sophia knew that despite her symptoms she was an otherwise happy child and that her issues were not rooted in any mental health struggles. Nonetheless, after endless appointments with doctors, specialists, holistic therapists and paediatricians, Sophia’s opinions remained unheard and disregarded while her symptoms still prevented her from a living a happy life.

Struggling to be Heard
Sophia recalls a particular appointment with a paediatrician where she was probed about her family, friendships and school life to a point where she was so uncomfortable and felt so ignored that she was reduced to tears. Having not listened to Sophia’s own views, this paediatrician pushed and pushed until she could provide a psychological diagnosis, as Sophia’s blood work was clear and she could not ascertain any other reason for her ailments. After another similar experience with a top gastrologist who refused to look into any physical illnesses after taking one glance at the paediatrician’s notes, Sophia felt defeated, overlooked and as if her own views were not important enough to be taken into consideration. Sophia had placed all her trust in the medical professionals she had grown up to believe she could rely on to help her when she was suffering. Instead, she was confronted with the reality that as a child, her views and
experiences were not valued by those in the medical profession and so as a young, impressionable young girl, she began to believe what these adults were telling her; that her illness was all in her head.

Learning to Cope

The only saving grace for Sophia was her relationship with her mother, Karina. Having lost all hope, Sophia relied on the unwavering strength and support of her mother to reassure her that there is always a light at the end of the tunnel. Karina provided Sophia with the one, simple thing that she needed the most: a listening ear. Through nights filled with story-telling and laughter, Karina and Sophia formed a strong bond, a bond that provided Sophia with the determination and drive to not allow her illness to define her. Sophia also eventually saw a CBT specialist who helped her with pain management by providing her with visualisation techniques to enable her to detach herself from the pain she was experiencing. She would picture herself with the people she loved and taking part in the activities she enjoyed the most, like spending a day on the beach with her beloved dog Teddy.

The Road to Recovery

Following a recommendation from a friend, Karina ordered a ‘home breath test’ from a gastro testing clinic in a desperate attempt to help Sophia obtain a diagnosis that would shine some light on why she was still in so much pain. This simple at-home test finally provided Sophia with the answers she had been looking for. Sophia was suffering from an illness called SIBO, a Small Intestinal Bacterial Overgrowth. This condition occurs when bacteria that normally grows in other parts of the gut begins to grow in the small intestine. Following some simple diet changes, Sophia began to feel much better within just ten days of receiving an official diagnosis. Sophia had finally gotten her life back after months of suffering and being ignored. Having her opinions and beliefs set aside by various doctors and specialists forced Sophia to spend approximately 7 months of her childhood in fear and pain. This pain and suffering could have been avoided by someone in the medical field simply listening to and valuing what Sophia had to say.
Although she has since made a full recovery, Sophia is aware of the fact that this is not the case for many children. Sophia had an excellent support system in the form of her mother, who stood by her when it seemed like her world was falling apart and there was no end in sight. Sophia is mindful of the fact that for those who do not have the same resources available to them as she was lucky enough to have, this simple test may never come to their attention or they may start to believe that the very real pain they are experiencing is merely in their head. Sophia hopes that her story shows other children that their views and experiences are real and deserve to be heard.

Sophia’s battle to be heard is a lesson in the importance of allowing children the opportunity to participate and provide their views on issues that effect them the most.

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