Living with a lupus diagnosis Dr Mary-Ellen Lynall Fellow, Department of Psychiatry, University of Cambridge

What makes lupus difficult to live with? Diagnosis No cure Visible symptoms Invisible symptoms Unpredictable symptoms Brain symptoms: fatigue, brain fog, low mood …

Patient experiences "Each flare feels more exhausting than the last" “Years down the line, I still don’t think I’ve adjusted to having lupus” “I don’t feel like me” “I didn’t recognise myself and I didn’t like myself. I was avoiding going to public places. I didn’t feel confident having conversations with other people” “I was feeling worthless, in a rut I couldn’t get out of. Picking on my wife for no reason. I was on all these meds and still in pain, so what was the point?” “I can’t talk to my husband about my worries because he fears losing me”

Having lupus makes brain symptoms more likely Fatigue Brian fog Low mood Anxiety Hallucinations

Taking or stopping steroids makes brain symptoms more likely Depression Anxiety Insomnia Euphoria Thoughts of harming yourself Hallucinations

Why are brain symptoms so common in lupus? How? Lupus Brain symptoms Stress

The immune system and the brain: not so separate Neurons ‘Blood-brain barrier’ Immune cells, chemical messengers and antibodies IL6 Rest of the body

The immune system and the brain: not so separate Neurons ‘Blood-brain barrier’ Immune cells, chemical messengers and antibodies IL6 Rest of the body

The immune system and the brain: not so separate Brain symptoms Brain Neurons IL6 ‘Blood-brain barrier’ IL6 Immune cells, chemical messengers and antibodies IL6 Rest of the body

The immune system and the brain: not so separate Stress Brain symptoms Brain Neurons IL6 ‘Blood-brain barrier’ IL6 Immune cells, chemical messengers and antibodies IL6 Rest of the body

The immune system and the brain: not so separate Stress Brain symptoms Brain Neurons IL6 ‘Blood-brain barrier’ IL6 Infection Immune cells, chemical messengers and antibodies Lupus IL6 Rest of the body

Stress and the immune system B cells Antibody-producers Autoantibodies

Mental Wellbeing: what does research say? Likelihood of depression Amount of exercise (hours per week) Social connections Sleep Staying active Eating well Learning new things Mindfulness Random acts of kindness Being kind to yourself

Being kind to yourself What would I say to someone else in this situation? “It’s understandable you feel like that…you’ve been through a lot” “Today has been difficult. That’s okay.” “What would help you feel better right now?”

Lupus and identity Me Me Lupus “I’m feel like I’m flipping between being healthy and disabled” Me “Lupus is part of me, but only one part of me. I can accept it but it doesn’t define me.”

Help is available! GP Your lupus team Psychological Wellbeing Service Medications and talking therapy In a crisis – call 111 Reasons to definitely get help: Feeling like you don’t enjoy life anymore, most of the time Feeling like you might hurt yourself or you can’t go on Seeing or hearing things that aren’t there You are worried about your symptoms Best chance of getting better quickly if you get help early!

What are your research questions? The future What causes fatigue, brain fog and low mood in lupus and other inflammatory diseases? How does stress affect lupus? Can we find better treatments for brain symptoms in lupus? What are your research questions? mel41@cam.ac.uk @MLynall