Aisha,a patient with beta thalassaemia major, from the United Kingdom

Looking after your mental health

Mental and physical well-being go hand in hand

Dealing with beta thalassaemia can be very time consuming, and it takes a lot of strength to overcome the challenges created by the condition.

Living with beta thalassaemia can be hard. There are good days and bad days. Worrying about what the future holds for you with your condition can cause additional stress.

It is important for you to look after yourself and your mental health. A positive mindset can have an effect on physical health. Think about it: even small changes can have positive effects.

Gekritzel
Sometimes, my beta thalassaemia affects my mood, causing anxiety. This in turn affects other symptoms of the condition.
A patient with beta thalassaemia, 29 years of age.
Gaia im Gespräch mit Kostas

Gaia, a patient with beta thalassaemia major, from Italy

You are not alone

Treating beta thalassaemia can take a lot of time, such as with the regular transfusions, check-ups and hospital stays. This can lead to you feeling like you are facing your condition alone. Many people with beta thalassaemia know this feeling or even suffer from anxiety or depression. Good mental health can have a positive effect on the course of the disease. 1

There are many reasons why beta thalassaemia can feel like a mental burden. Remember that other beta thalassaemia patients probably feel just the same. Bear in mind that these feelings are completely understandable – other people with beta thalassaemia might feel exactly the way you do. You yourself can take steps to support yourself and take care of your mental health.

It is important for family members to know that if they are caring for someone with beta thalassaemia, this can also have an impact on their own mental health. Think about it: to stay strong and be able to support your family member, you need to also be able to look after yourself. Seek help if you need it. The following tips may also be useful for you. 

Mental health help for beta thalassaemia 

There are lots of ways that you can look after your mental health, and there is no one-size-fits-all solution. You need to find out what works for you personally.

The following points may help you improve your mental health:

Ask your doctor for help 

If the treatment of your beta thalassaemia is a mental burden for you, you should say this to your doctor. If necessary, your doctor can refer you to other specialists or therapists, such as a psychotherapist. It is a sign of strength to accept this help. Health insurance companies also partially cover the cost of these sessions.

Turn to a person you trust

Even if it is hard, it might help you to talk about how you are doing. If you tell a person you trust about how you are feeling, it might also help you to find the right support. It can also be very liberating to talk openly about your own feelings. 

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Do you feel alone with your beta thalassaemia? – Contact a patient organization 

Calling a patient organisation is naturally always an option. Reach out to them – there will be people there who know about your condition and in many cases are also dealing with it themselves. They will understand your feelings and have probably already had the same thoughts as you. And while they know that you can spiral downwards, they also know how you can pick yourself back up again. Try it out. You'll find help and a shoulder to lean on there.

Many people with beta thalassaemia find it helpful to talk to other patients. They have the same condition and probably also the same worries as you do. Find out whether there are patient groups around you – ask your treatment team or a patient organisation, for example. You can also look on our Community page There are a few useful links there. 

Pay attention to the little things in life 

You know yourself best and you know what you enjoy – so, make time for the things you like doing. Keeping moving can also have a positive impact on your mood and can sometimes even help prevent depression. 2 You can find tips in this regard on the pages "The right diet supports your health" and "Fitness, the gym and exercise with beta thalassaemia" 

Ask for help when you need it

The people around you can support you with your condition on a day-to-day basis – including emotionally. However, there can also be situations where the help of professionals is a better solution.

Some patients find it helpful to talk to a therapist or counsellor, even when they are doing well. Therapy can help you to take care of yourself in your day-to-day life and to find out which situations influence your mood, as well as how you can nurture your relationships with the people close to you.

Your doctor is interested in your mental health just as much as in your physical health. So, make sure to tell your doctor how you feel and to ask for support. If necessary, your doctor can also help you to find an experienced psychotherapist. 

Self-care is important for you

Look after your mental health. Proper care can help you find a balance between your beta thalassaemia and your life.

Naziha, Betroffene mit Beta-Thalassämie major, blickt in die Ferne

Naziha, a patient with beta thalassaemia major, from France

Beta-thalassaemia and mental health – Kostas shares his experience..

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Unsere Unterlagen zum Herunterladen helfen Dir dabei, Dein Leben mit Beta-Thalassämie zu meistern.

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    1. Farmakis D, et al. 2021 Thalassaemia International Federation Guidelines for the Management of Transfusion-dependent Thalassemia. Hemasphere. 2022; 29; 6(8): e732.
    2. Choi KW, 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.