Sickle Cell and Mental Health: Anxiety, Depression and Getting Support
Sickle cell disease affects more than your body. Unpredictable pain, hospital stays, missed school or work, and sometimes being disbelieved when you're in agony can all take a toll on your mind. The NHS recognises that sickle cell disease can be difficult to live with both physically and emotionally (NHS), and US guidance encourages people to talk to their provider if they have feelings of depression or anxiety, as counselling and sometimes medicines can help (NHLBI).
If you're struggling, you're not alone, and you're not weak. Support is part of good sickle cell care.
How can sickle cell affect mental health?
People describe many different feelings, including:
- Anxiety, often about when the next crisis will come, or about going to hospital
- Low mood or depression, especially during long or frequent periods of pain
- Frustration and anger, at the condition, at missing out, or at not being believed
- Isolation, from friends who don't understand or from time spent unwell
- Medical trauma, after frightening crises or poor experiences in hospital
- Worry about the future, such as work, relationships, having children or life expectancy
Children and teenagers can be affected too, sometimes showing it as irritability, withdrawal or struggling at school.
Stress and pain: a two-way street
Stress is an important and common trigger for sickle cell complications (NHLBI). At the same time, pain, poor sleep and fatigue make it harder to cope with stress and can lower mood. That can become a cycle. Looking after your mental health is part of looking after your sickle cell, not separate from it.
Signs you might need more support
- Feeling low, hopeless or numb most days for two weeks or more
- Losing interest in things you usually enjoy
- Constant worry that's hard to control
- Big changes in sleep or appetite
- Avoiding hospital or treatment because of fear
- Using alcohol or drugs to cope
- Thoughts of harming yourself
Call your local emergency number, or go to A&E. In the UK you can call NHS 111 and choose the mental health option, or call Samaritans free on 116 123 at any time. In the US, call or text 988.
What helps?
Talk to your care team
Tell your haematology team or GP how you're feeling. Many sickle cell services have access to psychologists who understand chronic pain. In England, you can also refer yourself to NHS talking therapies (NHS).
Talking therapies
Cognitive behavioural therapy (CBT) and other psychological approaches can help with anxiety, low mood and coping with pain. Some are designed specifically for people with long-term pain.
Peer support
Talking to people who live with sickle cell can be powerful. The Sickle Cell Society runs support groups and peer mentoring, and there are online communities too.
Everyday things that help
- Breathing and relaxation exercises, which the NHS suggests for sickle cell (NHS)
- Gentle movement, see exercise with sickle cell
- Protecting sleep, with regular times and a wind-down routine
- Pacing, so good days don't turn into crashes
- Writing things down, which can help you notice patterns and say what you need at appointments
- Having a crisis plan, which can ease anxiety about the next crisis
When hospital experiences affect your mental health
Many people with sickle cell disease have had distressing experiences in emergency care, such as long waits for pain relief or not being believed. That can make it frightening to go back, even when you need to. If that's you, it's worth talking about with your team. Our guide to being heard in A&E has practical tips.
Frequently asked questions
This guide is general information, not medical advice. Always follow the plan agreed with your own care team. Read our medical disclaimer.
Related guides
Why people with sickle cell are often not believed in emergency care, what NICE says you should expect, and practical ways to get the care you need.
A simple way to log sickle cell pain — what to record, how to rate it 0–10 — plus a free printable pain diary template to take to your next appointment.
What a healthy sickle cell diet looks like, the nutrients that matter, which foods and drinks to limit, folic acid and iron, and a simple sample meal plan.