Pain Awareness Month

20 hours ago

2 min read

Gem O’Connor is one of our Senior Advocates, leading the Newcastle team of advocates who deliver statutory advocacy services to people who need support to be involved in decisions about their lives.

Gem lives with rheumatoid arthritis which causes her chronic pain so during #PainAwarenessMonth in September, Gem is sharing some of her experiences to give an insight into the challenges people with chronic pain face.

“Chronic pain is never just pain, it is much, much more and lives in every part of your life.”

“I have rheumatoid arthritis and chronic pain is the reality of my day to day functioning and is significantly debilitating and limiting in every area of life.

“My diagnosis also causes medical fatigue. Fatigue is not tiredness and rest does not resolve it, rest for chronic fatigue is akin to plugging your phone in to charge but forgetting to turn the socket on.

“The medication to slow the progression of my condition is classified as a high risk, high alert medication and is a hazardous substance in manufacturing and can only be handled in isolation.

“Side effects I regularly experience include nausea, hair loss, mouth ulcers, dehydration, and increased heat sensitivity. It is an immune suppressant and as such puts me at risk of significant infection even from just common cold. It requires regular hospital monitoring as it can cause organ damage especially liver damage. My liver functioning is currently elevated and progressively increasing and this is medically concerning, my medication has been ceased, increasing pain and progression, and I am subject to tests and investigations.

“This, and the condition itself, are time consuming with multiple appointments and hospital visits and expense. These factors are realities for those with chronic conditions and well as managing and funding multiple medications and prescriptions.

“Chronic pain is constant, it is waring, it is every day. The mental and emotional impact is often overlooked. At the most difficult and bleakest times, when pain is all that exists and the awareness that this is going to progress and get worse and will have significant impact on my future mobility, it is difficult to see any meaningful future in front of you. I live alone, nothing happens in my house and life that I do not do, often at the weekend I cannot move from bed. Isolation and the loneliness of pain are significant and the very real grief of loss of self and identity to pain and disability and the loss of the future.

“Chronic pain is never just pain, it is much, much more and lives in every part of your life.”

We'd like to say thank you to Gem for sharing her experiences. For information and support with chronic pain, visit Home - Pain ConcernPain Concern | Bringing the pain community together.