Growing up, when it came to the fight or flight response, I was a fighter. I guess my body was so used to my “warrior” attitude that it decided to fight itself too.
After nine years of symptoms, in 2018 I was diagnosed with lupus, specifically systemic lupus erythematosus (SLE) and discoid lupus erythematosus (DLE). This diagnosis which was met with relief that the symptoms I was experiencing had a cause, but also fear of how the condition would change me.
My symptoms range from mild to severe, but I’m hoping for remission which can happen. I’ve experienced fatigue, pain, joint stiffness, numbness, pins and needles, tingling, rashes, lesions, mouth ulcers, chest pain, difficulty breathing, heart palpitations, insomnia, weight loss, digestive issues, migraines, dizziness, blackouts, brain fog, difficulty speaking, reading and writing, hair loss and an irregular menstrual cycle. Lupus has caused me to be anaemic, and develop photosensitivity (intolerance of UV radiation), tooth loss, neutropenia, Sjögren’s syndrome and other linked illnesses.
How has it changed my daily life? It’s unpredictable, it affects my ability to plan (but I make them anyway), I can’t tell how I’m going to feel from one day to the next. I take medication daily. I have to be wary of UV radiation when I go into shops or get my nails done, so I have changed the way I dress, and holiday destinations are restricted too. Issues with mobility restrict long walks or runs: there have been times I’ve lost the ability to move my legs or arms. Having cognitive issues can make working a challenge. Mood changes are also a symptom of the condition.
People say I don’t look ill and I often have to explain myself. I see the inside of hospitals and my GP more than I visit friends. It affects relationships with family, friends, dating and my social life. At one point I was having weekly blood tests, but thankfully it’s now monthly. Lupus doesn’t care if you have a deadline or a house to tidy. Because of my cognitive issues, I’ve missed and turned up early for appointments, was unable to work for year, struggled with household admin, and had to postpone studying.
I’ve faced many challenges with healthcare, misdiagnosis being one of them. After the initial diagnosis, lupus became an excuse for everything which meant symptoms caused by other conditions were excused, or my symptoms disbelieved; an infection was missed because my lower back pain was dismissed as the lupus. I’ve experienced medical staff not believing my pain and refusing me pain relief. I’ve been unable to access sunscreen on prescription despite being entitled, and have been denied health insurance.
I try to raise awareness where I can. I’ve completed a sky dive, and published a poetry book about my journey, and I write a blog post for Lupus UK. I find self-care and realistic positivity essential for thriving with lupus. Strangely, it has also made me appreciate simple things, find new ways to be happy and live fully, perhaps more than I did before.