Feeling angry? Frustrated? Anxious? Low?
Having a bleeding disorder places extra demands on people and families, and sometimes it helps to talk to someone outside of your usual circle of family and friends.
Does any of this sound familiar?
- Struggling to cope with feeling different from others at home, at work, or school, and what to say to other people about your bleeding disorder.
- Frustrated that pain, injury or hospital appointment are getting in the way of living life – including work, school or sports.
- Knocked sideways by big life changes – starting a new school, moving to a new area, leaving home, having a baby, changes in the workplace, illness, divorce or bereavement – including the distress, grief and anger of losing a family member through acquired infection.
- Overwhelmed by the challenges of parenting children with a bleeding disorder, how to talk about it and promote independence while protecting them from bumps and bleeds, or deal with the challenges of raising children with extra needs.
- Trying to come to terms with and manage pain, or finding it hard to stay calm and make decisions about surgery without a ‘crystal ball’ to give certainty on potential risks and benefits.
- Irritated by other people ‘not getting it’, and the lack of understanding or awareness about how your condition is affecting you or your family.
You are not alone, everyone goes through times of stress and pressure and we all deal with this differently. However, if you’re feeling the strain, ask your haemophilia centre if they can refer you for support locally. Everyone needs someone who will listen and give them extra support throughout different times in their life.
Centres are increasingly taking steps to help people with a bleeding disorder to look after our minds, as well as our bodies, because we know that doing so is likely to improve health and wellbeing for the long-term. Many now have their own ‘in-house’ psychologists who work alongside the haemophilia doctors, nurses and physiotherapists, offering various support and ‘talking therapies’ which help children, adults, individuals and families to cope at difficult times.
There are also lots of ways you can help yourself to feel better, using simple techniques like relaxation and mindfulness to slow your body and mind down whenever you feel pressured. Here are just a few of the places you can go to find out more:
Mindfulness for Health is a practical guide to relieving pain, reducing stress and restoring well-being.
Mind, the mental health charity’s website has a wealth of information and advice for everyone, including factsheets on
Recommended books for adults
- Overcoming anger and irritability, by William Davies (ISBN 1849011311)
- Overcoming anxiety, stress and panic: a five areas approach, by Chris Williams (ISBN 0340986557)
- Living with Bereavement, by Alex James (ISBN 0716021668)
- Overcoming depression and low mood: a five areas approach, by Chris Williams (ISBN 0340986050)
- Total Relaxation (paperback and CD) by John Harvey (ISBN 9781568362243).
Recommended books for children and families
- Finding a way through when someone has died, by P Mood and L Whittaker (ISBN 1853029203)
- Confident Children, by Gael Lindenfield (ISBN 722539568)
- Understanding 12-14 year olds, by M Waddell (ISBN 1843103672)
- How to talk so teens will listen and listen so teens will talk, by Elaine Mazlish (ISBN 0060741260)
- What to do when temper flares: A kids guide, by Dawn Huebner (one of a series aimed at ages 6-12 (ISBN 1591473144).
The Haemophilia Society would like to thank Dr Anna Brazier, Consultant Clinical Psychologist at Cardiff’s Arthur Bloom Centre for helping us to produce this information.