One of the messages that every arthritis sufferer wants to get across is that the disease is so much more than inconvenient aches and pains or something you get when you’re old.
Brad Boult is only 55 years old and lives with psoriatic arthritis, an inflammatory illness that affects almost everything he does. It’s a disease that he has to plan for, compensate for, and work around from the moment he gets out of bed.
So many sufferers find it easier not to tell people about their condition to avoid confusion. “Many people just don’t understand,” he says.
“I think when people think of arthritis, they think of old people with gnarled hands or bad knees. But my condition, for example, affects everything from joints to ligaments, and even your major organs, which can be compromised by inflammation. Then there are things like the fatigue that comes with the inflammation.”
Finding the ear of someone who does get it will make a massive difference to the lives of arthritis sufferers because it’s not just the physiological complications – another outcome you can’t see is the mental and emotional strain.
Constant fatigue brings stress and frustration. The lack of mobility, brain fog, and even depression are all part of living with arthritis.
“Depression is something that I think everyone with arthritis goes through, and it’s something that we must support each other to get through.”
Brad was diagnosed about 15 years ago. Brad says that the drama started several years before his diagnosis when he became symptomatic but was still in the dark. When a condition affects our ability to participate in life and be as competent at work as we are used to, the emotional knock-on effects can be devastating.
“I had started to think of myself as lazy because I was just so fatigued all the time. That affected my self-esteem. Then you start looking into the reasons, and you finally get your diagnosis. Before you even get to, ‘I’m 41, I can’t have arthritis!’, you’re wondering what arthritis even is!”
“It’s like grief, honestly. You go through all five stages. You’re angry, you go through the denial, you say to yourself, ‘I’m not going to let this change me.’ You start trying to bargain with your condition, like, ‘if I do this, then I’ll be fine. I call it the grief wheel, and you’re bouncing in and out of it for a long time.”
Psoriatic arthritis is characterised by what we call ‘flare-ups’, meaning that sometimes your symptoms are in remission, then suddenly it comes back with a vengeance. When that happens, you’re asking yourself, ‘why me? Why did I have to have this disease?’ You’re straight back into that grief. And we all need help to get through that, Brad says.
Talk to people like Brad!
Brad is a volunteer for Arthritis New Zealand’s Peer Support Service, which connects trained volunteers who can share their experiences, offer advice, ideas and strategies, or lend an ear to others living with arthritis. The service connects people with arthritis to each other so that together we can help lighten the load.
“Being a Peer Support Service volunteer is the most impactful thing I can do for others living with this type of arthritis. I have lived with it for more than ten years, and I like being able to share my experience who needs some lived experience to help them through a difficult time.”
For more information on the peer support service, or to ask about volunteering, go to www.arthritis.org.nz/services/peer-support-service or email: firstname.lastname@example.org
“I had started to think of myself as lazy because I was just so fatigued all the time. That really affected my self-esteem.”
Peer Support Service
Speak to someone who has the same type of arthritis and is of a similar age as you.
The Peer Support Service is a group of trained volunteers who have arthritis and are responsible for providing non-clinical one-on-one telephone peer support to New Zealanders living with arthritis, which includes advice and experience of living with arthritis.
Learn More About Psoriatic Arthritis (PsA)
Psoriatic arthritis is a condition that combines the painful, swollen joints of arthritis with the skin disease psoriasis that causes itchy red scaly patches on the skin and pitted, thickened nails.
Between 10% and 30% of those who have the skin disease will also develop psoriatic arthritis, which can range from mild to severe and affect one or more joints. Sometimes, joints problems appear before the skin condition, while other people with arthritic symptoms never develop psoriasis.
Men and women are equally affected by psoriatic arthritis, which usually appears during adulthood. The condition varies from person to person, and can easily be mistaken for other forms of arthritis.