This article is more than 4 years old
A letter to the CF community from your psychologists
It has been almost two years since my colleague, Dr Sam Phillips, wrote an open letter to the cystic fibrosis (CF) community at the start of the pandemic. We wanted to write to you again following the lifting of many COVID-19 restrictions across the UK.
Everyone’s experience of the past two years will have been different. Some of you will have found shielding very isolating and difficult and may be welcoming a gradual return to the lifestyle you had before the pandemic. Others may be feeling anxious as restrictions are lifted. It’s possible that you’re experiencing a mixture of these feelings.
It has been a relief that very few people with CF have become seriously ill or died from COVID-19 infection. However, we know that sadly some with CF have lost their lives to COVID-19, and many of you will still be worried about it. With the number of COVID-19 cases still high, even though restrictions have now lifted we know that the risk of catching coronavirus isn’t over.
Changes to our daily lives
While government restrictions will have been difficult for many, they also provided ‘rules’ to follow to keep ourselves and our family safe, which many people will have found reassuring. Now that many restrictions are lifted, some may feel anxious and tired having to constantly assess risks and make decisions every day. It could also feel difficult if others around you are making different choices to you.
The pandemic created more flexible working environments for many, although those in retail and hospitality may have had to continue as normal. You may now be asked to return to the office, which might feel difficult. Speak to your employers about continuing flexibility if this is something you’ve found beneficial. If you have a Social Worker in your CF team, they can help this discussion. You can also contact the Cystic Fibrosis Trust Helpline, who can put you in touch with our Welfare and Rights team.
Other changes
The introduction of Kaftrio for many people with CF has been another major change. Whilst this is a hugely positive step for the community, your own experiences will have been individual. It may have been particularly difficult for those unable to benefit from Kaftrio. The Cystic Fibrosis Trust and the UKPPCF have recently updated their factsheet further exploring these issues.
The delivery of your CF care may also have changed. Many teams are now doing video clinics and remote monitoring alongside regular appointments. Not having to travel to the hospital as often will be a huge relief for some. Others may feel a bit disconnected from their team and miss the face-to-face contact.
Many have also experienced changes to their financial situation. The Cystic Fibrosis Trust can provide financial support as well as welfare and rights advice. Get in touch with the Helpline if you are in need of support.
Managing anxiety and uncertainty
If you’re worried about COVID-19 restrictions lifting, then some of the advice that Sam gave at the start of the pandemic is still very useful:
1. Control the controllable
We can often confuse worrying with problem solving. Try to separate the things you have control over (such as your own behaviour) and things you don’t (such as other peoples’ decisions and wider world events) – ask yourself, “Is this within my control?”. If it’s not within your control, ask yourself, “Am I getting any useful information by worrying about this problem? How is thinking about this making me feel?”. If you’re not getting any useful information and it’s making you feel upset, angry, or frightened then those are important signs that you need to move away from that thought. Try to pause and focus on something else that is within your control. Be kind to yourself – it’s human nature to worry.
2. 'Unhook' from your thoughts
Our thoughts can be very powerful and persuasive. Simply saying to yourself “I’m having the thoughts that….” or “I’m having the worry that….” can be a helpful technique in unhooking from your thoughts so you can see other ways of thinking about a problem. For example, if you notice thoughts like “I’ve not revised enough, I’m going to fail this exam”, instead try saying, “I notice that I’m worrying again that I’ve not revised enough and I’m having the thought that I’m going to fail this exam”.
3. Shift your focus
Bring your attention to something that you enjoy or is important to you. Notice that the sun is shining, play music you enjoy, watch your favourite TV programme, or go outside for a walk. You could even try using a mindfulness app. It can also help to connect with people you care about, either face to face or virtually. It may sound simple, but purposefully shifting your attention away from worry to something more pleasant will have a positive effect on your mood. You may not always feel like it, but it will help.
4. Remind yourself of your coping strategies
Living with CF at any time, but particularly over the past two years, will mean that you have had to develop skills to cope with difficult things in the past: treatments, managing clinic appointments alongside school or work, or coping with being in hospital. Remind yourself of what has been helpful at these times. This might include talking about your worries to friends and family or your CF team, exercise, craft activities or playing computer games.
Please remember that your CF teams are still there for you. If there’s anything that you’re worried about, related to COVID-19 or not, then do get in touch with them.
With best wishes,
Dr Rachel Massey-Chase
On behalf to the CF Psychology and Social Work Committee
Cystic Fibrosis Trust Helpline
Call Us
0300 373 1000 or 020 3795 2184. We’re here Monday – Friday 10am – 4pm.
Email Us
Send an email to [email protected] and a friendly team member will get back you.
Chat with us
You can reach us on our social media pages.