Myeloproliferative disorders are chronic illnesses, and because they continue over our lives, they can change the way we see ourselves.
While many people with these disorders take their illness in stride, others – particularly those who feel unwell or are facing serious risks to their long-term health – find that having an MPD brings up many difficult emotions.
Identify your feelings
When you have a chronic disease like an MPD, you may feel a variety of different emotions that can affect your state of mind. You may feel anxious, uncertain, frustrated, afraid or angry. These are all normal feelings, and they may emerge at different times or in different situations, for instance when talking with your doctor, when waiting for test results, when considering plans for the future – or even just organising an ordinary day. MPDs can create “background stress” – a stress that is always there, whether we’re thinking about it or not.
Sometimes thinking about illness too much can increase our stress. On the other hand, becoming an expert in your own care can be empowering – it gives you a basis for making decisions together with your haematologist and helps put things into perspective.
Keep track of your blood test results and treatment plans. Take notes when talking with your haematologist and track your care over time. Taking a strong role in your own care can give you a greater sense of control.
If you’re feeling anxious or afraid, try keeping a log or journal of your thoughts. Put your worries on paper and let the journal be a holder for these feelings. You might choose to share your feelings with a trusted friend or a counselor. A journal can also help you identify what is the most worrying and what sort of events or situations cause you anxiety.
Start a regular exercise programme, eat a healthy diet and just generally take very good care of yourself. You can find more information about caring for yourself in Living with MPDs.
Many people with MPDs find that they benefit from meeting other people like themselves. MPD Voice offers patients’ forums in several cities in the UK and beyond. We also offer a peer support or “buddy” programme – we can match you with a person in a similar situation. You can also try online support groups such as MPD Chat, or get involved in fundraising with the MPD community.
If you feel physically unwell or if you are finding it difficult to cope emotionally, your family and friends may be able to help. Ask them for assistance and give them suggestions. Your health care team, including your haematologist, GP, specialist nurse and other professionals may be able to assist you as well, in particular if you are suffering from physical problems or side effects. A health counselor or a psychologist can help you think things through and find solutions.
Sometimes the best way to reduce distressing feeling – or on the other hand reduce fatigue – is to avoid situations that are likely to cause problems. Save your energy for the people and activities that are most important to you.
Complementary therapies such as yoga and massage have proven medical benefits and can help to reduce stress. Meditation is a technique that can help to center your mind and both secular versions and more spiritual approaches offer benefits, so choose an approach that suits you.
MPDs add worry to our lives. The feeling of uncertainty is always there in the background.