This clip was recorded in 2017 where Dragon Claw’s (now MyFlareUp) co-founder, Susan Hughes, reflects on her own autoimmune diagnosis she received in 2004, and the lessons she’d learnt along the way.
Susan encourages people living with chronic illness to get into the driver’s seat of their healthcare journey by educating themselves, accessing trusted information, and connecting with supportive communities.
Susan’s story is a reminder that knowledge, support, and self-care can empower people to live well – despite their condition.
When your child is diagnosed with a chronic illness, it can be difficult to know where to turn.
In this video, Rebecca’s mum shares her experience of navigating her daughter’s juvenile arthritis diagnosis, searching for answers, finding the right treatment, and learning how to support her through the challenges of living with chronic illness.
She also reflects on how different things might have been if she had access to a community of other parents who understood what her family was going through.
Rebecca has lived with Juvenile Idiopathic Arthritis (JIA) since she was 12 years old. JIA is a condition that has affected her joints and energy levels. It can also cause pain, stiffness and fatigue – conditions Rebecca has met with a quiet strength, that says a lot about who she is.
She has learned to listen to her body, pace herself, and adapt. Some days are more challenging than others – especially since becoming a mother – but she continues to show resilience and determination. Rebecca says that her condition doesn’t define her, but is simply one part of her story.
Rebecca benefits from supportive people around her who understand that she may need extra time or rest. With the right care and treatment, Rebecca believes that continues to grow and thrive, which she does to her own rhythm. JIA may shape some of her days, but it never overshadows her spirit.
In this Dragon Talk session, Charlotte shares her story of living with Ankylosing Spondylitis.
For more than a third of her life, Jill has lived with Rheumatoid Arthritis. Jill shares with us the difficulty she went through in getting diagnosed and the impact its had on her life. She explains the importance of expressing your feelings when you can, and reminding yourself that your thoughts, emotions, and actions are all deeply interconnected.
Jill acknowledges that her tendency to hold onto things for too long, had made her life as a nurse so much harder. She talks about the value of sharing how you feel – at your own pace and in your own way – and the benefits it can have in bringing you relief, clarity, and a sense of being understood.
Jill believes we all deserve to feel supported and to be heard, and that learning how to express yourself is a compassionate act you can take to manage your mental health when you have a rheumatoid arthritis, and is sometimes the first step of compassion we can do for our self-care.
This is Jill’s story and her timeline of getting diagnosed with rheumatoid arthritis.
At 78-years of age, Jan was a regular in the gym – also the oldest on the floor. She took pride in her fitness and strength, lifting weights, running, eating healthily and training others in the gym.
Jan was used to setting high expectations of herself, so it came as a shock to her when she found herself struggling with simple tasks, like bending down to tie her shoelaces or getting up from sitting.
Then came the pain.
Jan explains how she’d kept this internal struggle to herself until finally, one day, she confided in her GP. She soon got on the right medication and 3 years later, she shared her story with us.
This was recorded 5 years ago, and Jan is now 86-years old and has been in remission since. She talks about being careful doing certain tasks that can impact her joints, but that she lives well with her condition and is still very mobile and healthy.
Rachel Lea is a lupus warrior of 38 years, and shares her story by documenting her challenging diagnosis journey. She describes how she moved forward and adapted to life with a chronic illness as a young person at school, at university, and the workplace as a secondary school teacher.
Rachel presents these vignettes of her life with authenticity, insight and perspectiv – but mostly hope, which is at the heart of her lived experience.
Michelle shares her personal experience of living with lupus, including her diagnosis, the challenges the condition has presented in her life, and how she has learned to manage living with a chronic autoimmune disease. Her story highlights the often complex and unpredictable nature of lupus and the impact it can have beyond the visible symptoms.
Michelle shares her personal experience of living with lupus, including her diagnosis, the challenges the condition has presented in her life, and how she has learned to manage living with a chronic autoimmune disease. Her story highlights the often complex and unpredictable nature of lupus and the impact it can have beyond the visible symptoms.
