My son Benji is 10 years old and suffers with EoE and dysphagia. He had been poorly for a while and he was finally properly diagnosed in December 2018. The first two local GP's I was taking him to were telling us that it was all in his head! Benji had dropped 4kg's at this time and he was terribly unwell and unable to swallow properly. I refused to believe that it was all in his head, so I went to a different doctor's surgery and I got a third opinion. I even went as far as taking him to see a psychologist. The psychologist didn't believe that it was all in his head but by now, Benji was suffering with a certain amount of anxiety due to his experiences. The third GP took the necessary time and steps in getting Benji properly diagnosed. He had an endoscopy early December 2018 and the rest is history.
As a single parent (just being a parent in general managing your child's disease) I struggle with my son's condition each and every day and I often feel alone with this as there is not a lot of support out there for me. Thank goodness for ausEE's Facebook page!
Over the last few years, Benji has missed out on a lot of school, particularly after his diagnosis. I have not been able to work for the past 2.5 years due to the constant care. I was really struggling with work life, struggling with Benji's condition, struggling with him being constantly unwell and I was struggling with a home life balance. The
stresses and strains of the diagnosis of the disease and then having to
cope with the stresses and strains of the disease, affected my marriage
greatly. My last boss was struggling with me being off so much or taking off from work so much that I had no choice in the end but to quit my job so that I could look after my son. Due to Benji being constantly poorly and due to the many doctor/specialist/hospital appointments, some days are a battle for both of us. We both often feel isolated, deflated and disheartened. I often feel like a nurse and feel like I have been in home isolation for the past 2.5 years, way before the COVID hit! Benji feels like he is always sick and often cries over this.