“I was diagnosed with SLE in September 2020. I had been experiencing horrid symptoms all summer and then one day I built up the courage to go to A&E. I had to go alone because of COVID-19 and that was a really big thing for me – I’m usually super anxious about this stuff and must always have someone with me – but I did it. A week later, I’m in a different kind of pain, so I go to the hospital again…after various tests, October 2020, I was diagnosed with lupus nephritis.

How was this happening to me, in the middle of a pandemic? I felt so… blank. All summer I was being pushed to the side by my GP, they were solely focused on coronavirus…but now, I’ve been diagnosed with this chronic autoimmune disease AND it was attacking my kidneys too?  I didn’t know how to feel other than lonely and scared – no one understood properly.

My biggest struggle with my whole diagnosis was having to go through it alone – the initial diagnosis, the hospital admissions, the appointments…I know it was because of social distancing and COVID but I had never felt so alone in all my life, I was in a massive flare-up, didn’t understand this illness at all and I had to deal with it all alone. Almost a year later, it’s still the same, my family have never met any of my consultants or sat in on an appointment. I can’t wait for the day that they can, so I feel that little less “alone”. Things are so different right now, I cannot work because the drugs I am on suppress my immune system and increase my risk of infection massively, so if I didn’t feel lonely before, I sure do now.

Social media has helped me to cope massively this past year. I have been lucky enough to meet a group of people online who have the same illness as me so it has been very comforting to have people to talk to that just “get it”. It’s also allowed me to stay in touch with all of my work friends, distant friends and family and keep them up to date as I’ve had to shield for a lot of the time. I’m kind of excited to see what this year holds. “