Hi, my name is Sarah. I am 46 years old, married, and a busy mum of 3. I also work as a Nurse Clinical Educator. Almost a year ago, I got a diagnosis of lupus. The diagnosis came after months and years of feeling unwell with various symptoms and health problems.
Initially, I was like yay! A diagnosis, something real, something to treat. A reason why I feel so ill. It is not in my head. I will get help, understanding, and an end to it. I will start to feel better…amazing! Being a nurse, I knew what lupus was, but in hindsight was fairly naïve in my knowledge and full understanding of the disease.
What I got….my experience and reflection of a year of having a lupus diagnosis.
The diagnosis of lupus means that I have a long-term chronic illness which will never be cured, with lifelong medications, treatments and hospital appointments. It has been life-changing having to adapt my lifestyle to learn to pace myself, learn what I can and cannot do, and establish what can make symptoms improve or flare. My symptoms can change daily, and not all are present at the same time.
What are my main symptoms of lupus?
- Physical symptoms: bone aching fatigue, rashes, ulcers/mouth sores, joint pain, excessive shaking, unexplained temperatures, flu-like symptoms, headaches, brain fog, difficulty concentrating, memory issues, pain and side effects from medication.
- Emotional/mental health: low self-worth/self-esteem, frustration, grief, anger, sadness, anxiety and feeling overwhelmed.
- Social withdrawal: pulling away from social activities and relationships due to challenges with symptoms.
- Isolation: sensation of being alone in dealing with the illness and its consequences.
For me, the overriding emotion I have is frustration. Managing lupus is frustrating, as I can try so hard to get better, but I continue to get worse. Or I start to feel better, then, without warning, a flare happens, highlighting the unpredictable nature of the disease. It is overwhelming to experience new symptoms and think, ‘Is it lupus or something else?’ Undergoing tests for a health problem and finding out that lupus has caused long-lasting damage to organs is devastating.
Lupus can be invisible, which makes it difficult for people to understand the severity of it. I often hear ‘you look well, you would never know you are ill’. I am given advice on how to help myself, such as get more sleep/rest, which I am sure fellow chronic illness sufferers know does not even touch the sides of the daily fatigue we drag around! Although, I appreciate that the advice comes from people who care and are trying to help.
Lack of awareness, knowledge and perceptions of lupus also exist within the medical world, and I have found my lupus journey with healthcare professionals to cause the most frustration!
The last 12 months have been very challenging, both emotionally and physically. Lupus…a word that now encompasses every part of my being, and the impact it has had on my family and my life is huge. I am still navigating the lupus diagnosis and take each day as it comes. Have I accepted it? No. Do you ever fully accept that you are chronically ill? I think not, but allowing it to be part of my life, although unwelcome, is probably the first step in moving forward. I have learnt that it is ok to feel angry and frustrated, feel sorry for myself sometimes and ask for help. I can say no to things, cancel plans, and I am doing the best I can with the amazing support of my husband Matt, my children Erin, Flynn and Joe and my family and friends. I also find great support from Lupus UK and other lupus groups.