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

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

3. 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”

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

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

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

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

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

9. 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

10. 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

11. 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

12. Stress and the immune system
B cells
Antibody-producers
Autoantibodies

13. 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

14. 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?”

15. 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.”

16. 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!

17. 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?
@MLynall