On World Lupus Day, 10th May 2024, we will be launching a brand-new LUPUS UK video about getting a diagnosis of lupus.

People from our community have a wide range of experiences of the diagnostic process, but despite differences in the first presenting symptoms, time taken, and healthcare professionals involved, there are often shared emotions. We wanted to share some diagnosis stories from people with lupus to demonstrate the diversity of experiences and give some reassurance to people on that journey or in need of guidance about the next steps.

Khiry, Maryann, and Beth kindly shared how they were diagnosed with lupus, their thoughts and emotions at the time, and some things they found helpful afterwards. We hope many people from our community will recognise some of their experiences and feel less alone.

Ahead of the video being launched, we asked Beth, Khiry, and Maryann about what it was like to take part.

What motivated you to take part and share your experiences in the video?

Beth: I’ve been a passionate supporter of LUPUS UK since my diagnosis of lupus in 2015. It’s been a hard journey to navigate, and I have often felt misunderstood or felt like my voice wasn’t heard, particularly when discussing my experiences with pain while being young. It felt really important to share what I know now and what I wish I had known at the beginning of my lupus journey. A frustrating aspect of my lupus journey has been explaining what lupus is and how it can have such an impact on daily life. It’s felt like a repetitive experience to have to over-explain myself and my condition to new people in my life and I sometimes feel as if I’m not able to fully convey my support needs or how I feel to those around me. This video shoot felt like the perfect opportunity to do just that.

Khiry: What motivated me was that I hoped I could inspire and help other people that are newly diagnosed or anyone that is struggling with lupus.

Maryann: I felt that it was important to have a balanced view of the experiences of lupus. I wanted to represent and advocate for others like me, to make sure that the voice of a black female was heard, being that the prevalence of the disease is higher in black and brown ethnicities. I also wanted to be able to emphasise the impact of having mainly cognitive and DLE symptoms. Often not considered to be as severe as a lupus nephritis diagnosis, these symptoms can shake your mental health to the core and has a lasting effect on your self-esteem and how you manage yourself daily.

What were your thoughts and feelings on the day of the video shoot?

Beth: I’m fairly used to being on camera by now, but I was really nervous that I wasn’t going to be able to get so many thoughts out for the camera. But once we got into the video shoot everything came naturally; it was at a nice, relaxed pace, and myself, Khiry and Maryann were given autonomy over what we discussed about our experiences which felt really empowering.

Khiry: I was a bit nervous before I arrived as I had never done a video shoot before, but once I was there and I met the other people it felt good to connect with them and hear their stories and I enjoyed the experience.

Maryann: I was extremely nervous about being in front of a camera. But I recognised that I had been given an opportunity to educate people on the disease in a way that I hadn’t previously. My story would be heard as part of a conversation with others, and would hopefully really hit home. It was also just really great to be able to have an open discussion and share time with two amazing warriors Beth and Khiry, both of whom I’d seen on the LUPUS UK socials, but had never previously had the pleasure of meeting.

Was there anything you didn’t share, which you wished you had?

Beth: Truthfully, I think I talked so much about my personal experience that we covered most things, and I had such a great time chatting to Maryann and Khiry about our experiences together that I feel the editing team will be spoilt for choice for content!

Khiry: I don’t think I touched on how it really made me feel once I was diagnosed, for example depression or embarrassment of what friends would think as my life would have to change.

Maryann: There was a lot I wish I’d shared that I hadn’t. I was kicking myself on the way home because I’d really wanted to use the opportunity to talk about symptoms that I’d experienced that weren’t well-known. Symptoms such as weakness in my pelvic floor, bladder control issues, pins and needles, tingling, prickly/itchy skin, hypersensitive skin, bloating, constipation, night sweats, severe sweating, even just after showering, insomnia, constantly losing my voice, feeling an unbearable sizzling sensation in my brain like parts of my brain were on fire (I believe due to lesions forming on my brain), blurred vision, blackouts, hallucinations, being extremely indecisive, anxious, having intrusive thoughts, suicidal thoughts, increased gum and teeth issues and constantly getting viral infections. On filming day, during the individual interviews, I was asked to list the symptoms I’d experienced pre-diagnosis, but I couldn’t remember them. Ironically, I had forgotten that I actually had a list of symptoms in my phone notes. When I eventually remembered the list, I realised that “memory issues” wasn’t written on it, but it was one of my most significant symptoms. It caused me to miss deadlines and forget to pay for things, costing me money in fees. I would write things in my diary then forget to check the diary, I would lock myself out often, lose keys, forget my phone, leave the hob/oven on, etc. It led to my life being really chaotic. I’d gone to the GP about my memory issues and had a test which confirmed that my short-term memory score was a lot lower than expected for someone of my age. I really struggle with my memory even now. I think rheumatologists sometimes dismiss the memory/cognitive issues because it’s not overtly life threatening, but for me it was really dangerous. My brain was not my own; I couldn’t control it all.

What do you hope people will get from watching the video?

Beth: I’m hoping that other people with lupus feel inspired to share their stories and are not afraid to speak up about the negative and positive experiences they’ve had. I think that sharing is a really important tool for navigating any chronic illness as your story will resonate with someone along their journey and that creates such a fantastic sense of community. And it’s an important reminder that you’re not alone, despite everyone’s journey being different.

Khiry: I hope people watching can use my story to help them understand the condition more, and also that they can use it as motivation to live life to the fullest and to live by the motto that you control the illness, don’t let the illness control you!

Maryann: I hope that people feel seen, vindicated, and thought of. I also hope that people who don’t live with the disease gain insight and understanding. At the very least they can sympathise with us and think about not just our conditions but also about what life is like living with the various other forms of chronic illnesses out there.

Thank you so much to Beth, Khiry, and Maryann for being so generous and open about their experiences. We can’t wait to share the video with everyone on World Lupus Day!

 

Resources 

Getting diagnosed – https://lupusuk.org.uk/getting-diagnosed/

Getting the most from your medical appointments – https://lupusuk.org.uk/getting-the-most-from-medical-appointments/

LUPUS UK Symptoms and Diagnosis PDF – https://lupusuk.org.uk/wp-content/uploads/2015/09/LUPUS-the-Symptoms-and-Diagnosis-V1.pdf

LUPUS UK A Short Guide to Lupus and Visiting Your Doctor PDF – https://lupusuk.org.uk/wp-content/uploads/2015/10/A-Short-Guide-to-Lupus-and-Visiting-Your-Doctor.pdf

Tests for diagnosis and monitoring of lupus talk by Dr Arvind Kaul – https://www.youtube.com/watch?v=FRAXayz4D0w&t=2s