Stella

Stella’s partner was diagnosed with MS in 2008. His initial symptom was loss of function in the right arm. He treated this with complementary therapies and regained enough function to play the piano again. But investigations led to a diagnosis of MS which, for Stella, was something of a relief because her partner also had some liver symptoms which they feared may be due to cancer. ‘At least’, Stella says, ‘MS is not life threatening’. Her partner was very shocked at the diagnosis. Stella was not present at the meeting with the consultant and she describes her partner’s reaction as being ‘frozen’. In her view, diagnosis is ‘thrust upon people’ without being sure they can cope. She believes more support should be offered.

Her partner did not want anyone to know of the diagnosis, which Stella found difficult. Eventually, after the death of his mother, he decided to tell people and she found it a big relief to be able to tell her friends. Something positive came from this too, in that they learned of people with MS who had been symptom free for four or five years. This took them ‘in a whole new direction,’ focused on holistic healing. Stella describes them both as ‘holistic minded people’ who regard illness as a challenge to personal growth.

Their financial situation has become strained since her partner’s benefits were stopped when Stella moved in to live with him after the diagnosis. She is the breadwinner in the household now and marvels how some people cope with the additional costs imposed by illness. She has been told that if her partner had been assessed differently then some benefits may have been retained and feels the need of expert social worker advice for their situation.

In addition to earning a living as a language teacher for adults in business, Stella is a trained complementary therapist and an artist. She has been able to give her partner massage but she feels that, ideally, this should be done by someone other than her. She has not been able to do her art work since her partner’s condition began to get worse.

The impact of MS on their relationship has, Stella says, been ‘huge.’ Initially, she felt that her partner grew increasingly needy and she responded by mothering him. More recently she says he has tried to break away from her. He also wants to change their living arrangements by moving house which Stella feels they are not in a position to do financially and because he is too weak. Stella acknowledges that things are ‘far worse for him than for me,’ but, nevertheless, feels that the resentments on both sides and the current difference of opinion between them are not easy for her to deal with.

Stella speaks with appreciation of the disability counselling her partner received but she is critical of other NHS services. In general she finds the NHS system over reliant on ‘facts’ and unsympathetic to holistic ideas of healing. She found the consultant to be remote and with an ‘academic’, rather than people-orientated, approach. She found the MS Specialist Nurse to be unhelpful.