Lived Experience Forum

[cloudcore]

💛💛

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I think the most wonderful way to learn about someone’s experience is to ask them about their experience and listen without attaching judgement or meaning to it. Reading all the articles you can get your hands on is fantastic, but if you want to learn about how a particular condition or diagnosis directly impacts the life of a loved one, you have must be willing to sit with them in their experience because everyone will have similarities & huge differences within any given experience of the same condition. 

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[Former-Member]

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@Former-Member wrote:

Sometimes asking about our pain will lead to conversations about supportive strategies, but not always. Sometimes we just need you to hear us without jumping in to find a solution for us. We may have a whole team of professionals working with us to try and find some answers, which can sometimes leave us feeling more like a science experiment than a human being. Alternatively, we might be under the care of inexperienced clinicians who do not know much or anything about our condition and therefore must become experts and self-advocates to protect our safety. All these things can be exhausting and often very traumatising, so it is important for us to be reminded that we are always worthy of respectful and compassionate support.

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💛 🧡 

[cloudcore]

We're in sync @Former-Member  😂💛

[Former-Member]

Oh how devastating @Shaz51 💔

[Shaz51]

Thank you @Former-Member 

We are living at my mum's place looking after her 

Those resources are great xx

[Former-Member]

As we come to almost the end of this event tonight, it brings us to our Last Question

Question 6. You have already provided so many handy resources along this discussion @Former-Member  but what other support’s are available for people experiencing chronic pain? Are there any additional resources we can access?

And if any other members know of any, feel free to share them here too!! ✨

[Former-Member]

Q6. What support is available for people experiencing chronic pain? Are there resources we can access?

There is still so much to learn about the nature of chronic pain and the ways that it can impact lives, so there are still some gaps to be addressed in terms of support for those experiencing chronic pain, but that is starting to change!

• Peer Support has been one of the most incredible avenues of support for my pain experience. Pain Australia has a great nationwide database for state-level support groups & helplines: https://www.painaustralia.org.au/find-support/care-in-community-1/painaustralia-support-groups-help-...
• Chronic Pain Australia is great for staying up to date with new & emerging pain management strategies, and works to destigmatise chronic pain: https://chronicpainaustralia.org.au/
• This Way Up runs an online course for chronic pain management skills, and is free with a letter from your clinician: https://thiswayup.org.au/programs/chronic-pain-program/

The relationships with those in our circles who act as support people are so important. Sharing an authentic account of your pain experience with loved ones can be hard because it asks us to be vulnerable & honest in a world that often dismisses our challenges. But when we give ourselves permission to be vulnerable and have those tough conversations with the people we trust, it can create new opportunities to connect deeply, collaborate, and explore new forms of support. It can be easy to feel alone and isolated in experiencing chronic pain. Many of us are taught to ignore our pain or to not speak up about it. But you are always deserving of support, and of a community where your story is heard.

[Former-Member]

Oh wow! @Former-Member those extra links sound so helpful - I look forward to having the time to immerse myself in them 😊

[Former-Member]

I love apps to help with things like scheduling appointments and reminding me to to certain tasks when I have big brain fog. The latest app that I am loving is abridge, which can record and transcribe medical appointments! It will even define any medical terms, and you can share the recording easily with anyone you appoint to your support list. It's free to download & use on both ios and android, too! https://www.abridge.com/ 

[Shaz51]

Love the extra links @Former-Member , thank you 

@Appleblossom , @Zoe7 , @Adge , @TAB , @Owlunar