Sickle cell and mental health
If you’re living with sickle cell disease, it’s understandable to find things challenging at times. You have shown strength and resilience. But the complications of your disease can start to take a toll on your mental health.
Mental health is a term used to describe emotional, psychological, and social wellbeing.1 It’s something we all have and can be impacted by events in our lives, whether we have a chronic illness or not.1 Mental health is different from – but related to - specific conditions such as depression and anxiety.1
Lots of things can impact your mental health such as stress, feeling low, sadness, loneliness, anger and frustration. As well as more physical factors such as sleep, diet and physical health.1,2
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, for example, can make a big difference to your health when living with sickle cell disease.
You are not alone
Managing sickle cell disease isn’t always easy and it takes strength to face the challenges it can throw at you.
Living with sickle cell disease and long stays at home or in hospital might make you feel lonely. If you feel down at these times, don’t worry, you’re not alone. Feeling lonely, sad or anxious for short periods is a normal part of life and is often resolved over time. However, if you feel this way for some time, you could be experiencing depression. If this is the case, reach out to your healthcare team to get the support you need.3
Other aspects of sickle cell disease may affect your mental health too, such as chronic pain.4 And if you’re in pain, you may struggle to sleep.5 And pain, fatigue, and sleep disturbance may be linked to depression for people with sickle cell disease.5 The disruption that hospital appointments can cause to your daily life can also be distressing.4
These feelings are all completely understandable – many people with sickle cell disease will have felt the same way. And importantly, there are lots of steps that you can take to support yourself and look after your mental health.
You do get depressed because it is a complex illness to live with. I have a lot of faith, but no matter how much faith you have, it sometimes makes you feel down.
Build emotional support
Try to find someone you can lean on when you need it – this could be your family, friends or your local community.6 The support of others can help you cope with stress and improve your mood.
Many people with sickle cell disease find it helpful talking to others who have the disease and so 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 more information on patient organisations and support groups.
It’s important too that your healthcare team includes the right people to support you and your needs. This might include a mental health team to give you some extra support.
Talking to a psychologist or counsellor about your emotions can be helpful, even if you’re feeling good. This can help you keep on top of your mental health as you continue to manage your sickle cell disease. You can ask for this support if you want it.
Understanding your thoughts and feelings may help you better manage the ways sickle cell disease affects your mental health. Don’t be afraid to open up about your feelings as this in itself can be helpful.
If there are some things you find hard to talk about, that’s okay. Some people with sickle cell disease have found that journaling can help them. It simply involves writing your feelings down and it’s a technique that can help you to be more aware of what your body is telling you – whether you are tired and need to rest for example. And it can also help you to recognise what type of diet or activities trigger your symptoms. Many people find that it can help them to feel more in control of their sickle cell disease.6
Dr Drasar on caring for your mental health and getting support
With mental health, my healthcare team are the reason I've been able to have therapy three times because they will always get in contact with the therapists in our area.
Support your mental health in other ways
A positive outlook can go a long way to supporting you to look after your mental health. Exercise is also a known mood-lifter – for some, it can protect against depression.6 Check out the Nutrition and Physical Exercise pages for ideas on how to stay healthy.
Know where to go for help
The people around you, which may include friends, family or your local community, can be very helpful in giving you emotional support on a day-to-day basis.6 Social media can also be a useful platform to connect with other people with sickle cell disease to build a support network and ask for advice. But sometimes you may need professional support.
Your doctor is 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.
There are many ways to access mental health support. Your GP or haematology team will likely be best placed to work out what kind of support you need. You can also access services through your local council, through pharmacies that offer mental health services or through NHS helplines.7
You can also contact the NHS talking therapies service directly – without going through your GP or healthcare team, this is known as a self-referral.7
It can also be helpful to talk to a therapist or counsellor even when you are feeling well. Talking therapies can help you find ways to cope with difficult situations in your life and so help to prevent and manage depression or low mood. It can help in several different ways – that might mean helping you build self-care into your daily life, spotting what makes your mood worse, or improving relationships with your friends and family, which in turn can boost the support around you.
A particular type of therapy called cognitive behavioural therapy (CBT) has been shown to be very effective in helping some people to manage chronic pain, as well as helping with depression and anxiety.8 CBT is a talking therapy that can help you manage any issues you have by changing the way you think and behave.8
CBT and other talking therapies are available through the NHS but waiting times will vary depending on where you live.9 Talk to your healthcare team about how you are feeling, they will be able to help you find a service and therapy that suits you.
Take care
It’s important to look after your mental health and many people with sickle cell disease manage this successfully. You can be one of them. One of the most important things can be simply to know when and where to ask for help when you need it.
- Top tips for self-management
- Your wellness journal
- Setting goals that work for you
- Getting the most out of your healthcare appointments
