This Is What Arthritis Looks Like

Arthritis is both a blessing and a curse. Tobie spent 11 years (from age 12) seeing different doctors and specialists before she was diagnosed. She was relieved when her symptoms finally had a name – Ankylosing Spondylitis.

Tobie has pain every day. Many different kinds of pain, sometimes shooting down body parts, sometimes dull and aching, sometimes a warm pain, or heavy pain, and sometimes she can’t walk.

“A flare-up for me is small amounts of pain that start in a familiar place, gradually getting worse throughout the day. Then it gets so bad by the evening that I can’t sit without hurting, can’t walk without holding every wall and doorframe to get to where I need to go. It’s a heavy pain that feels like your legs are magnetised to the floor. I also get sharp, radiating pain that goes from my sternum to my armpit and down my arm, and it’s sudden enough to make you think it’s your heart, but I know it’s not. The pain is exhausting, but it won’t let me sleep.”

On a bad day, Tobie has to ask for help, on a good day she pushes through.

“This kind of pain teaches you a lot about yourself, and it makes you appreciate little things that you may not normally think about if you were able-bodied all the time.”

The hardest part of having arthritis is the unknown. Not knowing when a flare-up will start, because it comes at any time no particular reason, Tobie says.

Quality of life

If Tobie didn’t have arthritis, she would be a stuntwoman.

“Sometimes the pain and everything that comes with it gets to you, so you have a meltdown and move on. At other times I appreciate the things my body can do. I’m pretty stubborn, and arthritis has taught me to use it, rather than give in to it.”

Tobie says that movement is life and she knows everything gets worse if she doesn’t move enough.

“Sometimes, it’s difficult to find the motivation to keep moving or get up when the fatigue is heavy. Sometimes you just carry on for as long as you can, then a small thing will hit you, and you realise how much you are dealing with. It’s a real battle between wanting people to know all that you are dealing with, and have them understand that you are still doing so much considering your pain levels. Most people don’t understand something until they have experienced it, so it’s easier to hide how you feel and keep going. I don’t want to be treated differently because of it.”

Arthritis is…

So much bigger than what people know. It affects so many parts of your body because of the inflammation. It’s more symptoms than just pain, and when you’ve had it since you were a kid, it becomes a massive part of your life and shapes who you are. Some people think you shouldn’t let it define you, but when you live with it most of your life, it just does.

“In the future, I hope there is more access to more medications that are needed. Everyone is different, so a lot of options are needed for everyone.”

Tobie is fortunate to have “great” doctors and medications that help her after trying other medications and doctors that weren’t so great. “It’s been a real roller coaster ride!”

“Arthritis New Zealand’s online events and discussions about medications, exercise, and coping methods have helped me a lot. Also knowing there is a helpline I can call if I need to is great. Having a support network is a huge thing for everyone.”