People Don't Want To Talk About Arthritis: The Truth Behind The Disease

Arthritis is a serious disease, not just your grandmother’s aches and pains.

I was recently invited tothe 21st Annual National Philanthropy Day Luncheon by The Arthritis Society. This year I was named one of their top volunteers for National Volunteer Day back in April so they thought it was appropriate to take me along for a day to celebrate philanthropists. This was the first time anyone has referred to me as a philanthropist and I love conference coffee so I was extra excited.

As I waited for their events coordinator and manager in the lobby, I overheard a woman say, “People don’t want to talk about diabetes or arthritis”. I instantly sparked up, walked over and introduced myself as an Ambassador for The Arthritis Society, a title one can only hold with experience so I hold it close to my heart. I knew her words spoke so much truth. I experience those words constantly as a patient and as an advocate. It turns out she once worked for the Arthritis Society, so she knew what she was saying. She knew from experience without living with the disease.

But the truth is: Arthritis needs to be talked about.

Why is it we don’t talk about arthritis more? Because we associate Arthritis with a part of aging? The devastating toll on someone’s life can be invisible? Could it be because we blame others for their lifestyle choices? We assume everyone has pain, it’s just part of life? Yet we fear diseases like cancer and ALS? Everywhere I look it’s awareness for the same diseases yet so many are in desperate need of a fraction of the attention some diseases get. Do we only fear diseases we can see or that cause death? Why are we supposed to grin and bear our pain?

Arthritis is a prevalent chronic health condition – for which there is no cure.

Many people are familiar with Arthritis being sore, tired, achy joints, they might know it also comes with feelings of fatigue. Those are all things we experience at different parts of our lives, pain and extreme tiredness. This is a part of aging or after injury. This is where the true reality of Arthritis gets lost in translation. There is a stigma that surrounds the illness because of the vast range it covers and the illness is often invisible.

Arthritis has a devastating impact on life.

Arthritis is the leading cause of long term disability on almost every continent in the world and can happen to anyone at any age, including infancy. Kids get Arthritis too.

Arthritis is a term used to describe a group of over 100 diseases characterized by inflammation in the joints or other areas of the body.

Inflammation is a medical term that describes pain, stiffness, redness and swelling. Left unchecked, inflammation can lead to significant and often irreparable damage to the affected areas, resulting in loss of function, limiting the ability to move and for many, disability. Some types of Arthritis can affect the heart, eyes, lungs, kidneys and even the skin. A significant proportion of individuals with Arthritis are overweight or obese and are physically inactive, adding undue stress to their joints. A significant proportion of people living with Arthritis report difficulties with activities of daily living, such as doing housework or running errands, and report needing assistance with aspects of daily life. People with Arthritis are more likely to experience anxiety, mood disorders, poor mental health and difficulty sleeping. Arthritis is much more than achy joints.

It can take years for people to get a proper diagnosis, to see a specialist, and find a right treatment plan if there is one that works for them. Arthritis is one of the most expensive chronic conditions to treat, for the patient and the government.

There is no cure for most forms, so once you have been diagnosed, Arthritis is with you for life.

Is Arthritis Fatal?

Left untreated, advanced forms of arthritis can eventually prove fatal and some forms such as diffuse scleroderma can prove fatal even with treatment. But even in moderate cases, most forms of Arthritis can significantly erode your quality of life, especially if they are left undiagnosed or untreated for prolonged periods. Irreparable damage can occur in just a matter of weeks from first symptoms, which is why it’s so important to get diagnosed and put on a treatment plan as quickly as possible, especially for inflammatory forms of the disease. A significant proportion of people with Arthritis also have other serious diseases like heart disease or diabetes. Many chronic pain patients self medicate and overdose, some commit suicide to escape the pain. It’s common to have more than one chronic condition, which are progressive.

Arthritis needs to be talked about in order to fund more research, treatments, advocacy and a cure.