“I was diagnosed in my mid-20s with rheumatoid arthritis (RA). I’m now in my mid 40s. I have a job where I do a great deal of physical work with my hands in a creative industry, and so I was initially upset and devastated with the diagnosis, thinking, “what on earth will life and my career be like now?”
“I decided after the initial shock that I needed to own the rheumatoid and I was determined that it was never going to own me. So I manage it and do not let it stop me living my life to the fullest. My friends often say that they are amazed at what I do. I think this is a key to my own personal journey with RA, and I continue to have this philosophy each day.
“Over the years, I have tried all the possible range of medications and disease modifying medications that I am eligible for. I seem to have had reactions to most of them. My hair fell out on one occasion with one lot of medication. Now I mostly manage without medication apart from the occasional cortisone injections and the occasional methylprednisone IV treatment.
“I have been lucky to have been able to access a rheumatologist through the public health system and have an awesome GP who is supportive and works with me with my arthritis. I know that lots of others with arthritis struggle to be heard or get support.
“Having arthritis is often a hidden condition. Most people would not know from looking at me that I have it. A lot of people are surprised when they find out, most often saying and thinking it is an old person’s condition. There have been times when I have started a relationship and told the new boyfriend I have it, and it has lead to some funny and some awkward moments. From once being called disabled, (that boyfriend didn’t last long after that comment), to those who think that I cant do anything for myself and smother me in kindness and help me to do everything, (I can make my own cups of tea, but at times I do need help cutting up pumpkin for making soup), to thinking they will hurt or break me when it comes to intimacy. It’s about open honest communication, and asking for help when you need it.
“I learnt early on it is important to look after yourself. Keeping warm, eating well, sleeping well, exercising, keeping active, and ditching the fashionable shoes for more comfortable practical ones. The later one was initially hard as I do work in fashion, but if I want to run about all day doing things, then I had to make a conscious choice. Getting out exercising, walking, doing low impact cycling, easy pilates, and going to the pool are enjoyable. It’s important to keep active. There are days when my feet or hips might be super sore, and that it is ok to acknowledge it, so I say to myself, “I’ll only go for a 30 min walk on the flat instead of a 2 hour bush walk”.
“The best Christmas present to me, ever, was a rubber jar opener thing! Opening jars is always one thing that I have ongoing difficulty with – they can be my frustrating nemesis at times. Also pull tabs on cans, or the occasional twist top on a craft beer. It’s those little everyday things that people take for granted, and don’t think about, or never consider could be a problem. It can be frustrating if your hands and fingers are sore with arthritis.
“A while ago I participated in a mindfulness research study funded by Arthritis New Zealand I have used mindfulness to get me through times of pain and fatigue that can come from RA. It has really helped and is something that I practice daily. I listen to my body; accept where it might be sore, work out ways to do things and continue to live life independently, and to the fullest. When I’m feeling tired, I slow down, but do not cease. This is me, and everyone with arthritis is different and each has their own journey with it and their own story.
“I own my rheumatoid, it does not own me, and I want to live to a ripe old age, there is so much in this world to do, and I want to keep on the go until the last day I’m on earth!”