Maureen is 58 years old, and was formerly self-employed to fit work around raising a family and managing her health condition. Now, however, she is no longer in employment. Maureen was diagnosed with lupus when she forty but has been living with painful symptoms since she was a teenager. The term lupus is most often used to describe systemic lupus erythematosus, it is a complex and poorly understood condition
For many years Maureen has lived with sudden flare-ups – periods where the symptoms of the condition can be extremely severe, including joint pain and swelling, severe fatigue, skin peeling and cold sores. Her positive attitude and individual strength have been key to keeping her spirits high and be determined to practice self management.
What self management means for Maureen
Maureen feels that she is an expert in her own body and in her condition since she has been living with the symptoms of lupus for many years. Furthermore, she knows that in order to manage her condition successfully, she has to practice pacing herself, allowing herself to take a rest when she needs one.
For Maureen, self management is about people owning their illness. Not being identified by the label of a condition but as the person they are themselves. She feels that it is important for health professionals to see people not as patients but as individuals, this would help them better understand what they can do assist people better with lupus.
Self management is not just one particular technique of activity, it is a range of things, which together help me live better.
She sees social inclusion as being a key tool in keeping herself well, and has joined a choir. As a result, she has improved her mental well being by simply being connected to her community. By feeling better within herself, it allows her to concentrate on wellness not illness.
Maureen is also proactive in attending conferences and events which can keep her knowledgeable in the health and social care landscape. She is passionate that the voice of lived experiences has to be heard by professionals and decision makers in order for services to be fit for purpose.