Opinion: What it's like living with chronic joint pain in your twenties

It's estimated that around 40,000 New Zealanders live with rheumatoid arthritis. Photo / Getty Images

OPINION:

Sometimes when I wake up in the morning, I can't move my legs.

My knees will lock into place after sitting in one position for too long. There's a long list of things that I instantly associate with difficulty: hills, stairs, sports, running, flights, long car rides, cinemas, bus or train trips without leg room.

Pain and fatigue are part of my daily routine. I'm used to having to explain why I can't play sports. I'm used to the unwanted advice, blank stares, and flat-out dismissal: "You're too young to be complaining about that." "You don't look like you have arthritis." "You're using it as an excuse to get out of participating."

I may look healthy on the outside, but there's an invisible disease gradually chipping away at my quality of life, slowly but surely. Some days it's unnoticeable, other days leave me crying with pain. I'm only 22, and at a time of life when I'm meant to be at my physical peak, it feels debilitating.

I was 14 when I first started experiencing arthritis pain, but it took years to get a diagnosis after countless MRIs, blood tests, surgeries and rounds of physiotherapy. I was eventually diagnosed with a form of rheumatoid arthritis.

This is an autoimmune disease, meaning your immune system actually starts attacking your own body tissue and affecting the lining of your joints. But nearly nine years after I first started experiencing it, I still struggle to manage this condition and the pain that comes with it.

It's estimated that around 40,000 New Zealanders live with rheumatoid arthritis, and women are three times more likely to develop the condition than men. It doesn't just affect older people - Kiwis aged anywhere from their teens to their thirties are suffering from it as well.

The World Health Organisation has found that arthritis is one of the most disabling muscoloskeletal conditions, limiting physical and mental capabilities and functional ability. Loss of wellbeing is even higher with rheumatoid arthritis in both males and females.

Research also shows that nearly two-thirds of people with arthritis, especially young people, develop mood disorders or mental health problems as a result.

Arthritis Research Canada's Susan Bartlett, PhD, says living with physical pain has a huge negative effect on mental health.

"It can become a vicious cycle when you feel bad physically, which worsens RA symptoms.

"But living with these symptoms and with the uncertainty of RA over time — and dealing with healthcare systems — can also lead to depression," she adds.

Many arthritis sufferers struggle to find the right diagnosis, let alone the right treatment. That's partly because New Zealand has a shortage of rheumatologists - the specialists who treat arthritis.

Arthritis New Zealand chief executive Philip Kearney says it can be a long wait to see a specialist and get an accurate diagnosis.

"People living in rural and provincial New Zealand can face particular problems getting access to a specialist, and joints continue to be damaged without good treatment," he says.

"Nearly half of the people who have arthritis are of working age. However, arthritis is still popularly seen as a condition that only affects the elderly."

Although I've lived with this condition for nearly nine years, it's not something I talk about very often. But talking about it is the key to raising awareness, Kearney says.

"The best way to raise awareness is through communicating with the people in your life - being open about the effects it has, to employers, friends, family, colleagues and your wider network. The more people talk about it openly, the more awareness we raise."

There are countless support groups for people living with arthritis on all sorts of platforms from Facebook to Instagram to TikTok. Members share different exercises, mental health support, or simply a community - just knowing that there are other people out there going through the same struggles.

So after spending nearly the last nine years of my life with this, I've decided to start talking about it more.

I may never find a cure, but being open about something that thousands of others are suffering just might make a difference.