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.
During our Dragon Talks session on 23 June 2026, group members reflected on the messages they would give their younger selves, if they could, on being diagnosed – and living with – an autoimmune condition.
These messages may be helpful for others who are recently diagnosed or who are struggling to live with their autoimmune condition. Four main themes emerged throughout our conversation.
1. Relationship with your Autoimmune Specialist
In some cases, members reflected that they had been very fortunate that their first (and usually continuing) medical specialist learned with them, with the understanding that each individual’s experience with an autoimmune condition is different. They were engaged from the beginning as partners in their own care. But in other cases, the initial specialists were more traditional, providing little information about the condition, options, what to expect, and had little time for consultation or any kind of discussion. In these instances, members were sorry that, because of their lack of experience, they took too long to find a different specialist to work with or even to get a second opinion. Their advice: always remember you are your own advocate and being proactive in your own care is your right. If you aren’t getting what you need, if the relationship is hierarchal and doesn’t involve you as a partner, find a new specialist.
Unfortunately, this can be easier said than done. For a wide range of reasons, there may be little choice other than to work with the one you have. In these instances, educate yourself as quickly as possible. Dr Google is far from infallible, but can help. Use resources like the MyFlareUp website and use the tools provided there, and the wide range of videos in the library to learn more about your condition and what you can do to live your best life in terms of activities, diet, sleep and so on. Use the tools, MyNumbers, what your various test results mean, and the MPaCT pain description and communication tool, to plan your time with your specialist to ensure you have your questions answers and the messages you wish to convey heard.
2. Coming to Grips with your Chronic Condition
Learning that you have a chronic autoimmune condition that will change your life, change the parameters of what you can and can’t do on any given day, change what your body can handle and what it can’t, can be devastating.
While certain conditions can, with treatment and time, go into remission, there are no cures. This is now a lifelong reality that may continue to worsen, especially if you don’t watch for what triggers flares and don’t reduce stimuli or don’t simply set boundaries on what you can do now, and what you can’t. It’s natural to deny it at first, to push hard, to refuse to moderate activities … but your body simply can’t respond as it once did so it’s vital to learn to listen to it. Your body will help you with this by getting your attention: you’ll find it’s hard to believe how bad the pain can be. It’s natural to grieve, to mourn what has been lost and to be uncertain, even afraid of what life will be like going forward. The sooner you can learn to pace yourself, get the rest you need, learn to be okay with doing less, the sooner you will find balance. You may need to reflect on what really is important to you, to continue to be able to do, so that you can priorize how you use your time and energy, and find supports to help you do what you want to do and go where you want to go. Resisting the use of a cane or other mobility aid, refusing to follow an anti-inflammatory diet, etc is understandable but will only slow you down, make it harder to live the life you want to live.
3. Asking for Help
Everyone agreed that learning to ask for help and learning to accept it can be hard. We are very independent individuals, used to taking care of ourselves. Seeing how our conditions impact on our family members, ‘taking their time to care for us’ can leave us feeling helpless, useless, and guilty for being a burden. Many of us are used to being the helper, not the one being helped. These feelings are understandable… but resisting reality is not helpful to oneself or to those who most want to support us in any way they can.
The first hurdle is to accept that we are worthy of being helped, that such a need does not diminish us: it’s simply a reality. The second hurdle is to actually ask for help. What might make this easier is to reflect on how good it makes you feel to be able to help others, and then ask yourself, why would you deny that good feeling to others, whether they are family, friends, coworkers or healthcare workers or strangers?
4. Things are Always Changing
The first hurdle is to accept that we are worthy of being helped, that such a need does not diminish us: it’s simply a reality. The second hurdle is to actually ask for help. What might make this easier is to reflect on how good it makes you feel to be able to help others, and then ask yourself, why would you deny that good feeling to others, whether they are family, friends, coworkers or healthcare workers or strangers?
Final Thoughts
All of the contributors to this discussion emphasized one final ‘learning’: the importance of Dragon Talks as a support network, a community of others who are living with the same challenges, is invaluable. There is nothing else like DragonTalks, or nothing we’ve found, that covers all the ground, all of the inter-related and inter-locked realities we live with, from pain to diet, new scientific research to alternative medicine options.
We are so grateful to Dr Charmaine Jones, Susan Hughes, and Alasdair Cook for creating and moderating these group meetings and especially for finding resource people to learn more about what is available to us, to help us live our best lives. There is no other ‘safe space’ where we can meet regularly to share experiences and questions… and hope to get answers. For example, one member is experiencing significant hair loss and wonders if there’s anything that can be done to slow it or stop it or to restore what has been lost. If you have suggestions, let us know!
If you’re not yet a member of DragonTalks, you can learn more about the two groups, one led from Canada, the other from Australia, here:
