Blog

With such a sunless spring, the first few hot days of summer have been tough for those of us living with EPP. Whilst we are experiencing a heatwave at the moment, it has been tough for some of us to build up a comfortable level of protection on our skin ahead of the summer months. Having a good amount of exposure pre-summer doesn’t just mean we have more protection physically, but our emotional wellbeing can be impacted as well. If we don’t feel as prepared and ready as we’d like to be, it can leave us feeling uncomfortable spending time outdoors leading up to the summer sunshine months (or in the UK’s case, the summer sunshine days).

So here are my top tips on how you can feel comfortable during the summer months (when you haven’t had enough exposure in spring):

Your EPP buddy

We know the feeling all too well, you’re invited to a family event and you have the initial pang of excitement followed by the sinking dread because it’s going to a sunny outdoor event. Choosing a buddy to support you at events can help. Whilst it doesn’t remove the fear of actually being caught out in sunlight, having a buddy who you feel comfortable speaking to when you’re at the function can make a huge difference. Someone else to have your back and keep checking in with you can allow you to feel much safer and more comfortable when it isn’t always easy to speak out. If you have a child with EPP, work with their teachers to put a plan in place for lunchtimes, sports days etc. Reach out and ask for support.

Little and often

We haven’t had much exposure to sunlight leading up to the spring months but adaptability is your middle name! It’s about taking advantage of those opportunities when you spot them. There is a heatwave in the UK at the moment and I have been using this time to gradually and carefully top-up my exposure in gradual increments. Make sure to be incredibly mindful of your exposure times and what works best for you. Each one of us experiences symptoms and exposures differently. For me, sitting outside in the garden in the early AM and late PM each day has really helped me to acclimatise in small steps and build my confidence up again.

Communication is key

When we’re feeling worried about stepping outside again, we can easily begin to fall into the trap of feeling alone in our condition. I’ve found that when I share concerns with family members or a close friend whom I trust, that they have a way of comforting, supporting and reframing my fears. For example, last week when I went on a mini-break to Wales, my friend and I went on a walk and I started to worry about the sun exposure. Rather than keeping it to myself, I told my friend I wanted to head back, but I was worried she would be annoyed. Her response? ‘Absolutely not!’ and ‘If someone you were walking with had asthma or a bad back and needed to recover, would you want to be the source of them being ill?’ Hearing my friend reframe the narrative in my head and rephrase it with logic helped to change my perspective on the experience to one of normalising and empathy. I encourage you to be brave and open up to those closest to you, you never know what insight they might offer?!

Find your indoor sanctuary

Engage in rituals, routines and activities that make you feel good. It’s so important to have your go-to self-care activities that allow you to connect back to you, no matter the weather. Anything from a simple moment to be with yourself over a cup of tea and a good book, to longer routines such as yoga and then a bath. Incorporate rituals that support and nourish you when the weather gets warmer so that you have an indoor sanctuary ready for when you start to feel anxious. As a mindfulness teacher, I’m slightly biased that daily meditation and mindfulness practise can greatly improve our overall happiness and wellbeing. This is my absolute essential routine to engage in daily and I often practice mindfulness before heading outside for longer periods of time to ground me and keep me present.

Keep connected

The BPA Facebook group is a fantastic way to get connected with your fellow EPP cohort! Here you can share your experiences, keep up to date on the latest news and research regarding the porphyrias in the UK, and discover porphyria tips and tricks. Feeling supported is an essential element to living with the disorder and the BPA have an incredible team working behind the scenes to support you.

So whether you are feeling ready to get out there this summer or pretty anxious about taking a step outside, keep connected, be kind to yourself and go at your own pace.