Coping
How is your psychological first-aid kit looking? Having a rare disease or condition in the family can mean living with uncertainty, upset and frustration as you try to navigate the care that is needed. There are lots of different ways that we respond when we are under pressure or witnessing a loved one struggle to thrive. Everyone is different and there is no right or wrong way to feel. Some days you may feel energised and on top of things. Other days (and sometimes the same day) you may feel overwhelmed, guilty or helpless. These are all normal responses to uncertainty, stress and distress. It takes a lot of energy (physically and emotionally) to keep going sometimes. It’s normal to feel fatigue or emotional exhaustion after a long or intensive period of expending large amounts of energy.
Why we need to think about resilience
Dealing with a rare disease can be challenging, especially when it comes to navigating the care and support you need. The survival parts of our brain can be activated when our circumstances don’t feel secure and under our control. In the short-term, this survival response can make us feel energised and it can carry us through some initial challenges. Many rare disease families tell us they feel this initial burst of determination. However, over the longer-term it can be exhausting if our brain continually focuses on any potential threat, for example, catastrophising when a health, social care or education meeting doesn’t go the way we wanted.
While many of our worries are warranted, it’s important to try to manage anxiety so that it doesn’t start to overwhelm us. If we don’t do this it can lead to feelings of not coping even with the little, everyday things. Other times, it can lead to ‘shut down’, making us feel low or even numb.
Tips and advice
Have you been relying on old coping strategies but are realising that you might need some new ones for your ongoing rare disease journey? Here is some advice from our rare disease community:
Be kind and compassionate to yourself. Doing your best looks different under different circumstances.
Try to accept (we know this is hard) that some things are outside of your control.
Frustration and anger are normal responses to difficult situations but accumulating and holding on to those feelings is exhausting. It’s okay to let them go. It doesn’t mean you’re giving up.
It can be really effective to schedule your wellbeing time in the same way as you would schedule a health appointment or important meeting.
Coping strategies and wellbeing activities look different for different people. For some people it is a dog walk, a swim or an early night, for other it is mindfulness, meditation or crafting.
Struggling to maintain self care?
Self care is not a luxury, nor is it selfish. It is what helps us to keep going despite the challenges of navigating a rare disease.
Be reassured that it’s not unusual to need a bit of help in learning how to self care when you are time poor or how to relax in a healthy way. It can take practice. For example, breathing exercises can help calm anxiety and release tension from the body. It can be really difficult to stick to our good intentions around wellbeing and coping better. Taking a bitesize approach is one way around this. There are many Apps that support very short reflective exercises. For example: this one based on Positive Mental Training and accredited by the NHS digital Apps library: https://www.feelinggood.app/programmes/
Sometimes we need more help than we can give ourselves.
Do reach out to your GP if you are feeling unwell. Rare disease advocates like Same but Different’s RAREnavigators can also provide practical help, emotional support and help you find talking therapies and initiatives that work for you.