Lupus or systemic lupus erythematosus (SLE) affects the immune system, causing problems in the skin, joints, and other organs, including the kidneys.
Around 60 per cent of lupus patients will develop lupus nephritis, a kidney condition caused by the autoimmune disease, at some point during their illness.
In collaboration with LUPUS UK, the national registered charity supporting people with lupus, we spoke to Karisse, Stuart, Sara, Michelle and Gillian, who are all living with CKD and lupus.
Karisse was diagnosed with lupus nephritis in 2020 after going to hospital with pain so severe she could not stand up straight
"Lupus changed my life drastically. The first year of my diagnosis was really difficult – I was diagnosed with lupus in August 2022 and two weeks later it attacked my kidneys causing me to be diagnosed with lupus nephritis.
"I was just really scared because this was all during Covid-19, so I had to do everything alone. The most difficult change for me was the need to take medication constantly – even to this day I still struggle with how many tablets I have to take – but I look back on how deflated and depressed I felt at the beginning of my diagnosis, and how poorly I was compared to now, and I couldn’t be more grateful with where I am.
"I was so confused at the beginning of my diagnosis with lupus as I had never met anyone with this condition before and I was diagnosed at the heart of Covid-19. I looked online and found out that there was a Lupus UK support group on WhatsApp. It’s been super healthy and four years later, I’m still a member of this group chat. It’s very refreshing to have that access, to speak to people whenever I need to and to know that they’ll understand what I am going through."
Stuart was diagnosed with SLE over 20 years ago, and now receives haemodialysis treatment
"When I was diagnosed, I wish I had known that I could still work full time (though it can be tiring at times). When I found out I was going to have to start dialysis, I started panicking about work, mortgage and supporting the family, as I still worked full time whilst having SLE.
"During, and after diagnosis, I had the full support of my medical team at the Edinburgh Royal Infirmary and the same goes when I was diagnosed with kidney failure. It was the staff and support groups available at the Edinburgh Royal Infirmary that helped me. I prefer to talk about things face to face as a support mechanism."
Sara is 27, and was diagnosed with lupus nephritis while abroad in 2023
"I wish people understood that just because I look well and young, it doesn't always mean I feel well or that I am healthy. However, I have found that sharing the health condition with people creates a greater understanding and an opportunity to gain support in the various areas of your life.
"My advice if you are diagnosed with lupus is do not deep dive into Google! Instead, read the information you are given by your healthcare professional, take time to process it and ask questions. When I was first diagnosed, I didn't receive anything, and I found trying to navigate the disease very difficult. If you are not given information, ask for it."
After finding blood in her urine and a kidney biopsy, Michelle was diagnosed with lupus
"Lupus has completely changed my life. Obviously, having to deal with daily pain and everything else that comes with it, but it’s made me so much stronger and more confident knowing I can deal with these things daily and still live a happy life.
"I have ‘met’ a few people online who also have lupus, and we chat to each other, and have become friends. My advice for people who have been diagnosed is to get help and get support! Let your nearest and dearest in on how you’re feeling, let them help you make sense of it all. Question things: if something doesn’t feel right, or is different than normal, ask someone. You need to learn a whole new you, so learn as much as possible.
"The one thing I wish the average person knew about living with lupus and CKD is what fatigue really is, what it actually feels like. It’s not just feeling sleepy! It’s stops you physically, you can’t do anything, you feel like have nothing left to give to get you out of bed or able to do things and sleeping for a couple of hours won’t miraculously make it all better."
Gillian was diagnosed with lupus nephritis stage 5 after the birth of her second baby
"I wish, when I was diagnosed, that had known that living with lupus and CKD does not mean my life expectancy will be shortened. With the correct information and management, you can live a normal life span. When diagnosed, I was told I had lupus nephritis stage 5 but after researching this I misunderstood and thought I had stage 5 CKD and thought I was terminal.
"It’s important you have a good doctor to explain things fully. Lupus and CKD affects everyone differently, and symptoms can vary and come and go. It’s important to pace yourself and get the appropriate treatment."
Support and information from LUPUS UK
LUPUS UK offers a peer support telephone service and online and regional peer support groups.
