Haemophilia and mental health: Protecting your mental wellbeing

Living with haemophilia can be full of ups and downs: some days you might be feeling fine whereas other days may leave you feeling pretty low. It's okay to have these down days - you're only human after all!

Even the happiest of people have days off...

Good mental health doesn't mean being happy and confident all the time. Even the happiest of people have low points – so don't feel like you have to put on a brave face every day. Learning to accept that it's okay to feel sad, anxious or frustrated at times can actually help you stay positive in the long term.

If the bad days start taking over...

There may come a time when you feel you're having too many bad days to cope with. This is not uncommon. In fact, one study found:

This goes to show, the psychological effects of haemophilia can be just as impactful as any physical effect.

Mental health should be given just as much attention as your physical health, so try to discuss your feelings in the same way you'd talk about other aspects of your haemophilia, like bleeds or pain.

It is also highly recommended that you discuss your feelings with your healthcare team, otherwise they may not know how you feel.

Emotional effects of haemophilia

Perhaps you feel frustrated about a spontaneous bleed, or anxious that your condition will interfere with your studying or work. Maybe it's the built up frustration you felt after telling your family and friends you can't join them again.

If you're going through a tough time, it's important to know that there are people and tools out there to get you back on track - some of which are signposted on this page. Remember, you can always discuss how you're feeling with your healthcare team.

Let's hear what the community have said about the PSYCHOLOGICAL impact of haemophilia..

There are many reasons why haemophilia can impact mental health – the quotes below highlight some of these:

    Watch Jeffrey discuss the realities of living with haemophilia and how it has impacted his mental wellbeing in the past:

    Getting yourself back on track...

    Recognising that you're not overreacting, and that the way you're feeling isn't unusual, can help you feel more confident in seeking help to improve your emotional health. This help can be invaluable in getting yourself back on track. Here's some tips we've gathered from The Haemophilia Society:

    • Acknowledge your feelings and try to recognise if there is something that triggers them. You might find you're able to address or change those things
    • Try to be open with how you're feeling and let people close to you know when something is getting you down. Bottling up sadness or anger adds to stress and can impact your relationships. Remember, having haemophilia is not a burden to those around you
    • Avoid stressful situations as best you can and learn relaxation methods to help cope e.g., deep breathing, meditation and exercise
    • Find your work-life, activity-rest balance. Make time for things you enjoy and focus on the positive things in your life
    • Read self-help books. Find a list of recommended books for people living with haemophilia HERE
    • Seek help from your healthcare team, therapists or counsellors - they can listen to your problems and recommend techniques to help you overcome any feelings of depression or anxiety
    NHF logo

    you can also learn more about depression and anxiety, and how best to manage them, by watching‘Beyond Blue: Managing Depression & Anxiety’ - a video created by the Hemophilia Federation of America.

    CHECK IT OUT HERE
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    References
    1. Witkop M, et al. Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18–30 years) with hemophilia. Am J Hematol 2015; 90(S2): S3–10.
    2. Jacob I, et al. Physician and patient reported anxiety and depression in hemophilia. Int J Technol Assess Health Care 2017; 33(S1): 138–139.