As the world begins to open up once again, many people are returning to community activities and rebuilding their social lives. But what about those who don’t feel they have a community to go back to?
Reducing loneliness in patient communities
When you live with a chronic condition, it’s easy to feel alone even around your friends and loved ones. Your personal experience is something they struggle to understand, no matter how much they wish to.
Certain conditions, such as Sickle Cell disease, lead to regular hospital visits which can not only be a very lonely experience but also pull you away from family and friends. You can miss parties, have to cancel plans last minute, or may even find yourself unable to attend your own graduation.
Being in hospital for extended periods can be incredibly isolating, and this was even more the case during periods of the pandemic where visitation was limited. After long periods of time in hospital, patients can be left feeling suddenly alone after discharge. Long stays in hospital or stays associated with severe pain can take a major toll on patients’ mental health, but there is often not much support beyond getting them medically fit for discharge. Leaving hospital without mental health support or the means to process their experience means that patients can be left feeling like they have been abandoned to manage their mental health on their own.
Living with a chronic condition can be an isolating experience, but it doesn’t have to be. Support groups dedicated to specific conditions or platforms that let you network with your community can be extremely valuable. While everyone’s experience is unique, talking to people who have an understanding of the challenges and barriers you face in everyday life can make a world of difference.
Managing loneliness takes a lot of mental resilience, and we spoke with two members of the team at Sanius Health – a platform that helps sickle cell patients manage their condition – about how to keep loneliness at bay. Naomi commented:
‘The way I battle loneliness is through self-love. Investing time in doing things that make me feel good, whether it’s watching a good show or doing my skincare routine. I try and remind myself that there’s a difference between feeling lonely and simply just being alone.’
Alone doesn’t have to mean lonely
Reia has Sickle Cell Disease and spoke with us about how isolating it can be having a condition that causes pain without warning. Loneliness is something she’s felt in full force, often finding herself feeling distant and like no one can ever understand what she’s going through. Despite the challenges she’s faced, she stays positive and wants other people living with chronic conditions to know they’re not alone and that there are ways to break out of that cycle:
‘I think covid has taught us all that we need a hobby!’ If you don’t have any solo hobbies already, start exploring online today and find something that suits you. ‘There are so many free resources that show us how to do something new, whether you want to explore your artistic side or get more skilful around the house with a bit of DIY it’s a great way to lift your spirits and feel great about yourself.’
Going out in the community
‘Having a range of techniques to deal with loneliness is always handy,’ commented Reia, who also advocates for building positive connections in your community:
‘Social media has become an open playground for finding someone who may have the same condition as you. A friendship is built in an instant just on the basis of knowing what daily struggles you both face. Support groups are another great way to connect; whether it’s online or in-person it’s a great way to build a bond with others and build up your confidence.’
Reia also recommends creating an easy exercise routine you can make a habit of. You don’t need to train for a marathon or become the world’s greatest weightlifter, but find something that gets you moving. ‘I enjoy a walk around the block watching something on Netflix, and before I know it I’ve added a few steps to my daily count, burned some calories and caught up on the latest series.’
Reia and Naomi – along with the rest of their team at Sanius Health – support patients in finding community and managing their health on a day-to-day basis. With the whole team at Sanius behind them and a strong peer community of peers, Sanius Health’s users are far less isolated and, hopefully, feel a little less alone this week.