Myelodysplastic syndromes (MDS) psychological impact
Myelodysplastic syndromes (MDS): coming to terms and adjustments
The emotional impact of MDS can be just as significant as the physical impact.
Each person with MDS will cope in their own way. Your healthcare team are experienced in supporting people through their emotions. Talk to them about how you’re feeling.
A Holistic Needs Assessment or Quality of Life questionnaire or assessment can often help to identify certain problems or help discuss them with staff.
People living with MDS sometimes experience a range of complex thoughts and intense feelings as they try to cope with the diagnosis, monitoring or treatment. This is often described as ‘being on an emotional rollercoaster’. The formal term for these emotional ups and downs is adjustment.
Adjustment is something every person will experience as they go through significant life events like divorce, bereavement or illness. It involves changes and losses of varying kinds and includes both practical and mental adjustments. In the case of an illness these include:
- getting used to being monitored
- having medical appointments and treatments
- potential loss of – or reduction in – some physical capabilities which, in turn, could affect things like employment, or personal roles and relationships
- disruption to one’s usual life patterns and routines
- questioning things normally taken for granted, like good health and future plans – perhaps making people more worried about things than usual.
Given the losses and changes involved – which to some can feel frightening – and the need to adapt to and cope with something new, adjustment can be both stressful and distressing. The good news is, while the emotional ups and downs of adjustment aren’t always easy, with time most people do adapt well to their new situation.
Coming to terms with your diagnosis
Although everyone is different, generally it is helpful to ‘process’ your thoughts and feelings, rather than ignore them. This means thinking about your diagnosis, including what it means to you and how you might cope. It means being aware of your feelings and being able to express them when you want to.
It can be helpful to talk about your situation with other people, both professionals and those in your personal life. Writing thoughts and feelings down can help you to process them too. It is useful to strike a balance between thinking and talking about your situation, and having periods in which you focus on other, meaningful and enjoyable things instead.
