Aisha living with beta thalassaemia looking down

Looking after your mental health

The challenges of beta thalassaemia

Managing beta thalassaemia can be time consuming and it takes strength to face the challenges it can throw at you.

If you’re living with beta thalassaemia, it’s understandable to find things challenging at times. We all have good days and bad days. And trying to find a balance between managing life with beta thalassaemia and thinking about the future may cause you worry or stress.

It’s really important to look after your mental health to help you cope with this in your day-to-day life. A positive outlook can make a big difference to your health when living with beta thalassaemia. Remember, it does not have to be a big change to have an impact.

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I think beta thalassaemia definitely impacts your mood at times, and it can definitely impact things like anxiety and well-known side effects with the condition because of stuff we go through.
Person living with beta thalassaemia, aged 29
Gaia talking to Kostas

Gaia, living with beta thalassaemia major in Italy

You are not alone

Living with beta thalassaemia and having to attend appointments (e.g., regular transfusions, monitoring, check-ups and hospital appointments) might make you feel lonely or worried.

What’s important to remember is that these feelings are all completely understandable – other people with beta thalassaemia may feel the same way, and there are steps that you can take to support yourself and look after your mental health.

If you care for someone with beta thalassaemia, the challenges that this can bring may affect your mental health. Remember, when you look after your own wellbeing, you’ll feel stronger and more able to support your loved one. Get support if you need it and follow the tips below, as they can also be helpful if you’re a carer.

Ways to support your mental health

There are lots of ways to look after your mental health – and there is no one-size-fits-all answer. It’s really about finding what works for you.

While you start to think about what works for you and your mental health, the following can be a good starting point:

Talk to your healthcare team

If managing your beta thalassaemia is starting to affect your mental health, it may help to talk to your healthcare team. They can provide support and advice, and let you know what other care may be available. Where needed, they can make sure you are referred on to a psychologist.

Build emotional support

Try to find someone you can lean on when you need it. The support of others can help you cope with stress and improve your mood. There might be some things you find hard to talk about. But letting your healthcare team and other people know how you’re feeling can mean you get the support you need. So try not to be afraid to open up about your feelings – just talking about it can help.

Many people with beta thalassaemia find it helpful talking to others who have the condition, as well as carers, and who know how it feels. You could find out about any local groups near you – your healthcare team may know if any exist. You can also check out our Community page where you’ll find links to patient organisations.

Support your mental health in other ways

You will know the things that help to lift your mood – so make time for these when you can. Exercise is also a known mood-lifter – for some it has been shown to reduce depression.1 Check out the Nutrition and Physical Exercise pages for ideas on how to stay healthy.

Know where to go for help

You may have people around you who can provide emotional support on a day-to-day basis. But sometimes you may need professional support.

Some people find it helpful to talk to a therapist or counsellor even when they are feeling well. Therapy can help you find ways to cope with difficult situations in your life. It can help in several different ways – that might mean helping you build self-care into your daily life, knowing what makes your mood worse, or improving relationships with your friends and family.

Your healthcare team can refer you to a therapist. You can also refer yourself to NHS talking therapies services here.

Your healthcare team are not only there to support your physical health. So keep talking to your healthcare team about your mental health too. Let them know how you’re feeling and ask for support when you need it. They can help you to access a therapist or counsellor should you need to.

Take care

It’s important to look after your mental health. One of the most important things can be simply to know where to ask for help when you need it. By getting the support you need, you can find the right balance between managing beta thalassaemia and living your life.

Naziha living with beta thalassaemia major looking into the distance

Naziha, living with beta thalassaemia major in France

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    1. Choi KM, Chen CY, Stein MB, et al. Assessment of bidirectional relationships between physical activity and depression among adults: a 2-sample mendelian randomization study. JAMA Psychiatry. 2019;76(4):399–408.