photo of Eileen Davidson holding awareness ribbon

When I tell people I was diagnosed with arthritis at age 29, the typical response is bewilderment that someone that young could have arthritis. Arthritis? That’s an old person’s disease that causes joint pain. Right? Most people tend to not have a clue what arthritis really is. 

That is only part of what arthritis is. Living with arthritis some days I wish that was all it was, but no, arthritis is so much more. When I am done telling them about the disease they usually respond with “I didn’t realize arthritis was so serious.”  

Yet one in four people live with a form of arthritis. There is a huge chance you or someone you know lives with arthritis and you may not even realize it; arthritis and musculoskeletal conditions are often invisible.  

  • In the U.S., 59,000 people live with arthritis (one in four adults or 23.7 percent) and a staggering 350 million or more worldwide. 
  • 300,000 of those in the U.S. with arthritis are children. Arthritis can be diagnosed in children as young as a few months old. 
  • Arthritis left untreated can cause permanent joint damage and deformities.  
  • Certain types of arthritis can be life threatening when organ involvement occurs. Additionally, some forms of arthritis and the medications used to fight them, weaken the immune system making it harder to fight off infections and recover from illness and injury. 
  • Arthritis increases the risk of heart disease, lung disease, obesity, diabetes, and certain forms of cancers. 
  • Nearly half the U.S. population with arthritis also have heart disease. 
  • Not all forms of arthritis and musculoskeletal conditions have adequate treatments or a cure.  
  • The treatment and lost wages of arthritis cost some countries hundreds of billions each year. 

I Learned the Hard Way

My first experience with arthritis was in my teens when my grandmother had both her knees replaced and she stayed with us during that experience. Since she was in her 70s, and I was only 16, I figured this is what happens when you get old. Even though it was in front of me for so many years, I still fell victim to the misconceptions and stigmas that plague it. 

Then I was diagnosed with rheumatoid arthritis before I even had gray hairs, wrinkles, or celebrated my 30th birthday. That same week of my diagnosis, my aunt, who had been living with RA for decades before me passed away. I felt lost and confused, I thought I was too young for arthritis, nor had I ever known that arthritis was so serious. She was wheelchair bound, had curled fingers, and was always in pain. I knew she had some sort of arthritis but she was also a lot older than me and had diabetes too. Was this what was going to happen to me too? 

How Stigmas and Misconceptions Hurt  

I had been experiencing chronic pain for a number of years, which both myself and my doctor assumed was just carpal tunnel from working a repetitive job. I was young and healthy — what could possibly be wrong with me? I did not know I could ask my family physician to do imaging or blood work until I could barely function and nothing I tried made me feel better.  

The symptoms kept piling up. Pain was everywhere, plus extreme fatigue, never-ending colds, cystic acne, night sweats, stomach problems, swelling, depression, and brain fog. I couldn’t sleep due to pain yet I was so exhausted I couldn’t function during the day. Simple daily activities like taking a shower, walking to the store, and even someone sitting next to me on the bus caused pain. I needed to rest, constantly.

I had spent years in pain without a diagnosis or treatment because I did not know what was going on with my body nor how to vocalize it. Communicating about our symptoms can be difficult if we don’t really understand what we are going through. Knowing the symptoms of rheumatoid arthritis helped me ask for the necessary bloodwork to find out if I had it.  

Why Arthritis Awareness Is So Important

There are so many reasons why it’s important to increase awareness of what arthritis is and who is affected by it. Raising awareness can help people get diagnosed and treated more quickly. What’s more, raising awareness can increase support and understanding and improve quality of life for people already diagnosed and living with arthritis. 

Many people with arthritis have other risk factors that increase their risk for poor COVID-19 outcomes. It is important for others to know that they can take their part in keeping us safe from the coronavirus and other infections. 

What to Do If You Suspect You May Have Arthritis

If you or a loved one suspects you may have arthritis the most important first step is to get an accurate diagnosis of what’s causing your joint pain and speak to your primary care physician about your symptoms.  

Being aware of a disease and its early symptoms means someone who is experiencing them may be more likely to take action, get a diagnosis, and get treated. It’s important, for example, that people know arthritis can be so much more than just knee pain, a stiff hip, or sore hands. Knowing that some forms of arthritis can cause a wide range of symptoms could prompt people to go to health care providers when they experience symptoms like slow healing, brain fog, constant infections, and fatigue in addition to joint pain. Early treatment and diagnosis is important in effectively treating arthritis of all kinds. 

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.