Lived Experience Forum

[Oshun_Blu]

Hey folks! I’m Oshun_Blu (they/she), and I’m one of the Counsellors from the SANE Australia team. I also happen to live with chronic pain and have for most of my life. I live with Ehlers-dahnlos syndrome, a connective tissue disorder that affects many areas of my body including my joints. It was only after I was diagnosed with ADHD & Autism as an adult that my care team was able to finally uncover the mystery symptoms that eluded doctors for years. In addition to Ehlers-danlos Syndrome, I have a blood clotting disorder called Factor V Leiden, and experience chronic pain in my chest & legs following a hospitalisation for Pulmonary Embolism and Deep-vein thrombosis last year. While I have recovered from the initial hospitalisation, the experience resulted in some scar tissue inside my legs, heart and lungs. I am passionate about destigmatising the experience of chronic pain and how it connects to our mental health. In addition to working with the team at SANE I am undertaking a Master of Cognitive Neuroscience through CQ University with a focus on stress responses and neurodiversity, though am currently on hiatus to focus more on my own overall wellbeing 😊

[cloudcore]

So great to have you here @Oshun_Blu , really looking forward to deepening my understanding of chronic pain and it's impact on mental health 😊

[flybluebird]

Yes, I'm really interested in hearing more about this topic @Oshun_Blu  as having a couple of family members who have various chronic pain conditions, I can use more knowledge around this 😊

[Shaz51]

Hugs @Oshun_Blu 

My great nephew  has @Ehlers-dahnlo xx 

I have diabetes and kidney disease and arthritis and have CRS which I was born with 

[flybluebird]

We'd love to hear any of your own experiences & thoughts around this considering your own and family members experience @Shaz51

[flybluebird]

SO.... let’s kick this off with our first question for you @Oshun_Blu as well as any of you in the community that have any relevant experiences to share with us along the way…

Question 1. How do you define chronic pain and the relationship it has to our mental health?

[cloudcore]

Hi @Shaz51 , thank you for sharing. I'm looking forward to hearing your story and experiences too 💛

[Shaz51]

@Oshun_Blu , @flybluebird , @cloudcore 

Have lots of aches and pains throughout my body which specialist says it is from all the uria acid ( toxins ) which is going around the body as the kidney can not get rid of it anymore 

[Oshun_Blu]

Q1. How do you define chronic pain and the relationship it has to our mental health?

Chronic pain is any bodily pain that is ongoing for a period of more than six months. Chronic pain can affect anyone and may occur because of injury, nerve irritation/damage, inflammation caused by an inappropriate response by the body's immune system, or even without a particular origin. Chronic pain can continue long after the original injury or illness has healed.

Pain acts as an important signal for the brain, and so it’s relationship to mental health is quite deep and complex. Essentially, when we are in pain our brains kick off a series of amazing physical and chemical reactions all throughout the body. These changes occur to get us to away from the source of pain as quickly as possible, also known as the ‘fight or flight’ response. Most of the time, bodies resolve these changes and return to normal quite quickly--like stubbing your toe or hitting your funny bone. But with chronic pain, the physical and chemical changes continue because the pain signals do not switch back off. This puts a huge amount of stress on the body & creates a cycle of inflammation that can be incredibly difficult to interrupt and/or break. You can read more about the cycle of chronic pain and how it may present here: https://www.curablehealth.com/infographic/path-out-of-chronic-pain-2?gclid=EAIaIQobChMIja7tv6Wk9gIVx...

Chronic pain is so much more than an inconvenience. It often destabilises many areas of life including relationships, capacity to work, general wellbeing. As we know, these factors all contribute to mental health. Because the body’s pain signals are always switched on, sleep and eating patterns can also be affected due to constant stress within the body. Chronic pain often makes socialising very difficult because no two days look the same. This can lead to intense feelings of isolation & loneliness as we must often choose between seeing loved ones or prioritising our health while also grieving the loss of having bodies that may not be able to do things we used to love to do.

[Oshun_Blu]

@Shaz51 thank you for sharing some of your story, and that of your great nephew! I hope that tonight is supportive for you, and would love to hear any thoughts or experiences you may wish to add to tonight's discussion ❤️