Page 3984 - Week 12 - Tuesday, 29 November 2022

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I’ve lost my career, my opportunity to have children and my independence as I can’t even shop, cook, clean and some days dress myself. On the rare occasions we go out, my partner has to push me in a wheelchair. This is not how I planned to spend my 30s, or the rest of my life.

One of the things that women said they find helpful is peer support groups for young women with autoimmune disorders, not only for practical advice on managing their health condition or navigating complex health and social support services, but also for improving their sense of belonging and social connection with people who really understand their experience. In the words of one of the women who participated in the research:

It’s actually really good talking to other people face-to-face, it feels really good to just talk to other people who have the same problems or similar problems and the whole mental health issue as well because there is the depression that quite often comes with all this …

Support for carers is also helpful. Peer group support for the partners of younger people with autoimmune disorders can be very helpful in navigating family and personal relationships where the person is both a carer and the partner, parent or child of someone with a chronic condition. Carers who have had to reduce or give up paid work or are no longer able to participate in the social things that are important for their own wellbeing need to be able to spend time with people who understand that experience and to be able to support each other. I would like to acknowledge the ongoing work that Carers ACT does in supporting and connecting carers with each other and in navigating the services in the ACT that can help carers.

It is important that the community understands that autoimmune disorders are unlikely to have been caused by preventable lifestyle factors and that people of all ages, genders and cultural backgrounds experience these conditions. Many of the women who participated in the 2018 Women’s Health Matters study were highly educated but their work life had been interrupted by periods of treatment and recovery, and worries about discrimination as a result of that impact. This has flow-on effects for the financial security of these women that can last for a lifetime, particularly if they have had to reduce paid work hours or stop working altogether, and there are impacts on their ability to maintain social relationships and to do the kinds of things as a parent that they want to be able to do with their children. It also affects their relationship with their partner.

Many young women with these kinds of disorders have talked about not being listened to or believed, including when trying to access health care, which can slow down the process of getting a correct diagnosis and finding the treatment that works for them. What this tells us is that women are still experiencing being distrusted about their own bodies.

As we work together as a community to become ever more inclusive and accessible, we have the opportunity to change the way we look at chronic health conditions such as autoimmune disorders. By learning more about these conditions and understanding how to support people in our lives who have autoimmune disorders, we can make our community more inclusive—by looking at the strengths of a person, at their creativity, knowledge or innovation, their ability to come up with flexible or adaptable solutions

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