Overview - Our carer (JR) was a mother looking after her daughter who has CFS, POTS, and an unexplained seizure disorder which recently manifested. She did not talk about herself at all other than the story and past as well as previous and current conflicts with the daughter and healthcare professionals.
Her daughter developed long COVID and related CFS and POTS. For a long time, they couldn’t figure out what the daughter had, and the family grappled with the health system. Eventually, they found a supportive community and answers with other carers and supportive doctors. They struggled to be recognised and supported by the healthcare system initially but have slowly found more and more support and recognition.
During the interview itself, we were expecting as a class to be able to ask and hear about the experience of being a carer and the feelings, sacrifices, and hardships we were primed to hear from previous content, but JR evaded questioning about her own feelings and personal experiences by selectively answering certain parts of questions and avoiding other parts, often controlling the conversation and moving away from topics concerning her experience of being a carer for the most part.
I personally didn’t massively pick on this until after when I recollected with the class. I attributed and still do attribute this “non-standard” carer account to the fact that her daughter is still high school age and so her life hasn’t massively changed in structure as she was already in a caring position as a mother.
JR also seldom talked about her husband and son (which I find rather alarming). She said she thought her son was doing fine with the whole thing, but he had an outburst/meltdown at school, which says otherwise.
Overall, the account was more about the daughter instead of JR herself, and so we didn’t get deep information about the account of a carer. Nevertheless, information exists in this case to be learned, especially regarding carers who haven’t had the opportunity to reflect and still persist but do not look around themselves to comprehend their situation. Additionally, it made me think about dealing with patients who aren’t as open, honest, or calm and mild, which was an assumption I may have taken for granted.
I learnt quite a bit about CFS and the daughter’s related conditions as well as care for people with CFS. I also saw how having a child with chronic conditions may affect a mother, but this case is not the rule.
I felt like even though this was non-standard, it still presented a learning opportunity to grow from.