Meet Tessa, Hannah and Laura, the volunteers that help engage with our digital communities.
In Hannah’s words, online/digital support is great in that it can provide real-time peer advice or support when needed – even if that is in the middle of the night, which is much more effective than waiting to attend a support group in person or talk on the phone during business hours.
Read their stories and how they help us keep up the good work.
What is your experience with arthritis?
I was diagnosed with JIA (Juvenile Idiopathic Arthritis) when I was 4 years old and I don’t remember a life without it. Throughout this time I have experienced many ups and downs and from a young age, I have been faced with many difficult challenges because of my illness. The physical barriers and pain and the side effects of medication are exhausting. However, I am extremely lucky to have great support around me and from these negative experiences, I learnt resilience and how to maintain a positive attitude even through the tough times. I still currently experience regular pain and am now on medication which I self-inject. I firmly believe that my condition does not define me and that having arthritis should not stop anyone from achieving great things in life.
How did you get involved with Arthritis New Zealand?
My paediatric nurse sent me an application for a youth leadership camp in 2016 and I have been involved with Arthritis New Zealand ever since. The camps have helped me meet some other amazing people who have been through similar experiences to me. Without the help of Arthritis New Zealand, I wouldn’t have had the opportunity to be connected with others with arthritis due to living in such a small town. So I will always be extremely grateful for this.
Did this connection with Arthritis New Zealand motivate you to get involved with helping and supporting other young people, how do you connect with them online?
I use the social media platform Instagram to keep me up to date with the Arthritis New Zealand and to stay connected with people. My connection with Arthritis New Zealand has helped me develop the ability to work with children of all ages as well as learning to look after individuals who need extra support and assistance. These are just some of the skills I have learnt and my experience has motivated me to help younger kids at school and others within my community. My experience with Arthritis New Zealand has also encouraged me to pursue a career in healthcare next year, so I can continue to help others which is become something I am really passionate about.
I was keen to put my hand up to help out when I read Arthritis New Zealand was in need of an online support group coordinator as I had personally received a lot of support when I was first diagnosed with psoriatic arthritis nearly 2 years ago, and I am always keen to give back to the community I am very much a part of.
Volunteering and helping people in need fits well with my own personal ethos and it seemed like the role was written for me, given my experience in moderating large professional Facebook groups and providing support for cancer patients in my day to day work. I was keen to ensure the group kept providing the service I found so helpful when I was first diagnosed.
Online/digital support is great in that it can provide real time peer advice or support when needed – even if that is in the middle of the night, which is much more effective than waiting to attend a support group in person for instance, or talk on the phone to an Arthritis Educator during business hours. The support groups often provide a safe place for people to vent frustrations, ask tricky or difficult questions with the anonymity that being behind a computer screen offers. Our support group is for New Zealanders only, and provides local advice in fitting with our cultural needs, which differ from the large international groups also available online, but our group also has a wide reach – being online we are able to have members from remote rural New Zealand along members from our big cities, all supporting each other in their moments of need, I love the community feel our group has grown.
I was diagnosed with Rheumatoid Arthritis (RA) at 21 during my first year away from home. I moved to a new city to study at Massey University College of Creative Arts. I recall swelling in my fingers and wrists around hand-in time at the end of a semester and shrugged it off as a bit of RSI due to the amount of sewing I had been doing. Within two months my GP at Massey had me diagnosed with severe RA.
Nine years on and I have learnt a lot about how precious our health is, and not something to be taken for granted. I spent my formative 20’s experiencing chronic pain, chronic fatigue, failed medications, side effects from medication, additional medical conditions brought on by the RA, immobility, weight gain and depression. All the while my peers were watching, and looking for ways to help and support, but I felt truly alone.
I feel that RA is as much a mental mountain to climb as it is a physical one. It has taken time, and I have come to grips with my condition and how this will evolve in future but I am at a point in my life where I can talk about it.
I made videos for Arthritis New Zealand during lockdown because I do not see enough young adults talking about Arthritis. It is a privilege to share my thoughts and tips as to what works for my RA, but the more important aspect of sharing on social media is advocacy and support for others. I share my story in the hope that it reaches out to someone going through the same pains, and knowing they are not alone.