As the world is facing the global uncertainty and threat of the COVID-19 pandemic people may find themselves experiencing a number of difficult feelings. In the face of a crisis and the changes to the normal way of living it is natural to experience worry, stress and feeling out of control. Every person will react differently and so it is important to listen to your body and notice what you are experiencing. Some people may feel angry that their plans have been cancelled or sad that they cannot see their family, whereas others might feel grateful for some enforced rest and time to stop. Many of us will be experiencing a mix of emotions that change from hour to hour. There is not a ‘right’ way to feel.
None of us will have dealt with something quite like this pandemic before and therefore it is normal to have some difficult feelings come up when adjusting to the new ‘normal’, For people who are living with a long-term condition like Sickle Cell Disease it can feel especially challenging when you have been advised to ‘shield’ for 12 weeks. It may take some time for your brain and body to adjust as our natural instinct is to go into survival mode when there is a threat or crisis which creates fear.
We have been thinking about some challenges that you might be facing, including:
- Anxiety and uncertainty about the future and what it might look like
- Low mood as a result of the challenges of the pandemic or as a result of previous challenges you have been facing
- Feeling isolated as a result of being physically separated from friends and family
- Not being able to do what you normally do to feel well, i.e. your hobbies, socialising, which might feel frustrating or upsetting
- Feeling trapped or having a lack of control
- Feeling overwhelmed
- Ensuring your basic needs are met (e.g. food, shelter, medical needs)
- Adjustments to the way you receive care in the hospital such as virtual consultation instead of face to face contact
Some patients have told us about some interesting positive aspects to the situation, including:
- Feeling like the whole world being ‘put on hold’ is giving them a chance to catch up
- Feeling less pressure to achieve things like work or studying or socialising
- Having permission to rest and recuperate and take each day as it comes
- Feeling like the rest of the world is getting a flavour of what it can be like to have sickle cell – having plans curtailed and limits placed on activity as well as having a heightened awareness of health concerns
- Having an opportunity to pause and re-evaluate what is important in life and how to live life based on what matters to you
We have some ideas about how to cope with the current situation. Some of them might be helpful for you and you might have tried some of them already:
- Using some practical strategies to help with day-to-day life. For example, setting a routine, making sure you have a regular sleep/wake time so you feel rested, looking after your health (perhaps trying out new healthy recipes and making sure you take your regular medications).
- Ensuring you do something enjoyable every day and find something that you want to do. For example, starting a new hobby, learning a new song, growing some herbs or playing a game
- Taking things day by day and trying not to think about the whole time period ahead if it worries you. Breaking tasks or time down into manageable chunks. Some people find meditation, yoga or lighting a scented candle helpful to stay in the present moment.
- Finding creative ways to stay in touch with other people. For example, video calling someone or still connecting in with your regular groups of friends by having a virtual dinner party.
- Doing activities that are in line with what is important to you. So if you value creativity, you might want to try a daily art journal, or if you value exercise and keeping fit, you might want to find an online workout class you could join. You might find it helpful to look at this book (https://www.actmindfully.com.au/wp-content/uploads/2020/03/FACE-COVID-eBook-by-Russ-Harris-March-2020.pdf) or YouTube video (https://www.youtube.com/watch?v=BmvNCdpHUYM) created by Russ Harris about responding to the COVID-19 situation.
- Anxiety management – e.g. breathing techniques like this one: https://www.nhs.uk/conditions/stress-anxiety-depression/ways-relieve-stress/ or grounding techniques like this one using your five senses: https://www.independent.co.uk/life-style/anxiety-5-4-3-2-1-mindfulness-activity-trick-how-does-it-work-ease-anxiousness-immediately-a8199296.html
- Here are a list of ideas of free, online resources: https://chatterpack.net/blogs/blog/list-of-online-resources-for-anyone-who-is-isolated-at-home
- Here is a link to a helpful video about the current situation: https://drive.google.com/file/d/12VRTzP07Xl3XMfHwCbf_L_qOm05tVvZ7/view
If you start to notice that you do not feel like you can cope, there are places where you can get additional support:
- You can contact your sickle cell psychology team
- You can contact Samaritans: https://www.samaritans.org/how-we-can-help/contact-samaritan/
- You can get text support through the free crisis line Shout on ‘85258’ anywhere in the UK, 24/7
- NHS website about mental health support: https://www.nhs.uk/oneyou/every-mind-matters/
- Government website for advice on wellbeing due this time: https://www.gov.uk/government/publications/covid-19-guidance-for-the-public-on-mental-health-and-wellbeing/guidance-for-the-public-on-the-mental-health-and-wellbeing-aspects-of-coronavirus-covid-19
We hope you find these thoughts and suggestions helpful. Keep well and keep safe!