Volunteering taught me how charities like Long Covid SOS provide vital lifelines for their followers

This blog post is written by Melis Erdem, who has recently left the charity after several months volunteering. Here she shares her thoughts on her experience

I volunteered as a social media assistant for Long Covid SOS from October 2023 to April 2024. My godmother, also a volunteer for the charity, developed Long Covid in 2020 after working as an NHS nurse on the frontlines. I do not have Long Covid; my only knowledge of the illness and its detrimental effects on the body was solely due to my godmother’s experiences.

However, I did not realise how utterly devastating Long Covid is until I began volunteering. With over 200 symptoms and no known cure, sufferers are reeling from the lifestyle changes they’ve had to endure; many previously led very active lifestyles or engaged with their local communities. Across Long Covid SOS’s social media platforms, followers share their experiences of heartbreak, loss, frustration, medical gaslighting, and trauma. Their honesty and vulnerability are a sobering reminder of how crucial the charity’s work is. I had no idea that some ‘researchers’ try to disprove Long Covid as a legitimate chronic illness, or that several news sources post dubious articles questioning if Long Covid is the same as ME or CFS.

Volunteering has also reminded me of the power of words. When drafting captions for Instagram or X (Twitter), I was mindful to use strictly factual language and to remain as objective as possible. Social media can be a dangerous source of misinformation and can even lead to political extremism. The UK Covid Inquiry was hugely educational and further demonstrated how important charities like Long Covid SOS are. I watched senior ex-government ministers feign ignorance, avoid direct questions, and attempt to save their own reputations while the British public continued to suffer the results of their gross misconduct. It was a challenge to condense the information presented into 280 characters - and to remain objective and factual. Directly quoting Matthew Hancock and Boris Johnson allowed me to disseminate information accurately.

However, I also have witnessed how social media brings people together; online connections formed via Long Covid SOS are vital lifelines for followers. My notifications are flooded by engagement with Instagram posts expressing opinions on an article, a testimony, or a news story. The strength of this online community extends to Long Covid SOS’s team of volunteers. Despite all the challenges its members endure, the team remains resilient, supportive, and incredibly kind to one another. I was immediately welcomed onboard and received support and encouragement for the work I produced. Building on my previous advocacy work, I learnt to create graphics using the charity’s colour scheme and contributed towards the cohesive aesthetic across social media platforms.

Volunteering my time has also reminded me how important boundaries are. I often felt tempted to continue working on a social media post late into the evening, commit to extra projects, or spend longer than necessary trying to make something look ‘perfect.’ I’ve learnt that social media does not need to be perfect - as long as the posts reflect the charity’s mission statement and engage followers, it’s good enough. I’ve also learnt that instead of over-committing to various projects, conserving my energy to focus on a few tasks allows me to produce better content for the team.

Finally, volunteering has helped me contribute towards positive change. In the future, I plan to work for an organisation focused on decolonisation, and the work at Long Covid SOS has enabled me to understand the ways a charity works. As an able-bodied young person, it is difficult to understand what it is like for your life to change completely. In many ways, I will never understand - each person’s lived experience is incredibly unique and personal. However, I will continue to show my support in whatever way I can. From my experience with my peers, Long Covid is generally perceived as a risk only for a certain type of person. I previously thought the same - since it was not discussed on the news, radio, or in newspapers, I did not pay much attention to it. Unfortunately, I now know that it doesn’t discriminate - as demonstrated by Long Covid SOS’s collaborations with Long Covid Kids. Moving forwards, I’ve decided to try and talk about Long Covid wherever possible, to remind others that the pandemic is not over. Campaigning and advocacy work must be carried out. And people with Long Covid deserve recognition, research, and rehabilitation. I am grateful for my time spent with the team.