Anita’s mum was diagnosed with MS when Anita was about 11 years old. Anita spent most of her teenage years and young adulthood as her mum’s primary carer. She feels that this experience has had lasting consequences for her, both negative and positive.
Anita’s mum was diagnosed with primary progressive MS when Anita was about 11 years old and died when Anita was twenty six, in 1999. Anita wasn’t told very much about the illness when it was diagnosed and didn’t really understand what was wrong with her mum, but realised that it caused tension in the family. Anita has few memories of her mum, or of her own childhood, before the diagnosis. She mostly remembers being alone with her mum for most of the time during her teenage years (her step-father worked nights and her older sister left home at 17) having to help her with physical activities; for example, dragging her up the stairs to bed, taking her to the toilet, cleaning her teeth.
Anita didn’t do well at school because she was focused on caring for her mum. No-one at school knew of her caring responsibilities and no-one at home was interested in her school work. She didn’t want to tell her friends. She felt isolated and without any support. But she also felt guilty for dwelling on how she felt, when it was her mum who had lost almost everything. Anita’s mum relied totally on her and Anita made her mum the focus of her life, above everything, into her late teenage years. She feels that she lost much of her own life during this time but does not regret that, believing it was the right thing to do.
Part of Anita’s role was advocating for her mum when she felt that caring services provided by the local authority were inadequate for her mum’s needs, and on occasions when her mum was hospitalised. Eventually, Anita left home and her mum moved into a nursing home. This was another feature of living with somebody with MS where Anita felt unsupported, having to make this decision alone, with feelings of selfishness and guilt.
Anita expresses the feeling that MS had a huge and long-lasting impact on her life. Above all she felt deeply unconfident and as though her life would not amount to anything. Some of this feeling persists, despite outward success. Anita made a decision, just before her mum died, that she wanted to work in human resource management. She pursued this goal with determination, supported through all the challenges it has brought by the memory of her mum. She has gained two degrees and recognition as a talented professional within her company. Nonetheless, Anita feels angry that MS has robbed her of so much in life. For example, she feels that she would now have a family were it not for MS.
Anita also identifies some positive aspects of her experience of being a teenage carer. She is able to appreciate simple things like being able to brush her own hair. She takes care of her own health. She is open to other peoples feelings and genuinely cares for them, expressing this partly through voluntary work with children in care. Ironically, she had not made a connection between this work and the persistent sense of needing to be needed which came from caring for her mum.