Emotional Wellbeing

Understanding and dealing with fear,
anxiety and resentment

Fear and anxiety are common emotions for anyone learning to live with a long-term condition, like haemophilia. As a parent who has just had a child diagnosed with haemophilia you will have many feelings of anxiety and fear about how to protect your child from bleeds and social exclusion, how to manage the condition on a daily basis and the effect it may have on your child’s future.

Teenagers may increasingly feel frustrated and angry about how their life is limited by haemophilia or the loss of control they may be feeling. It is common for any teenager to fear “stigmatism” so a teenager with haemophilia may feel under particular pressure.

Adults with haemophilia often worry about starting new relationships and having a family, or feel anxious about the potential for haemophilia to limit their employment opportunities.

Dealing with fear and anxiety

If you or your child has recently been diagnosed with haemophilia talking to other people affected by the condition can be a significant help. It will also help you recognise that haemophilia is a manageable condition. Healthcare providers regularly introduce families to other families in a similar situation to provide support and share experiences. Talking with a counsellor can help you deal with undue fears.

If you are finding it difficult to cope emotionally with the challenges and frustrations of living with haemophilia then talking to someone is a great first step in dealing with the issue. It could be a trusted friend, teacher, or member of your healthcare team. You may also want to consider joining a support group – sharing experiences and receiving encouragement from others in a similar situation can be very helpful. Your doctor or nurse may put you in contact with a counsellor who will help you work through the issues. Whether or not you speak to someone professional, there are a number of “coping strategies” that can help you deal with emotional strain.

Fear of needles

An injection is a negative experience for most children – it is normal not to like needles and be afraid. However, there is a distinction between not liking needles and having needlephobia. Some people have such an immense fear that they avoid medical treatment where needles are used. Such avoidance behaviour is a sign of needlephobia. Advice on dealing with needlephobia can be found in a Haemophilia Society fact sheet, Needlephobia.

It is also essential to speak with the team at your Centre, who will be critical to ongoing care and must be at the heart of any strategy to overcome needle fear.