Credit: Eileen Davidson

I was diagnosed with rheumatoid arthritis at 29 years old. As I tried to accept my life changing diagnosis, all I could think was “I’m too young for this.”

Oh, how wrong I was.

As I learned more about rheumatoid arthritis, or “RA” as I would soon learn through support groups, I quickly discovered how little I knew about arthritis and how many myths I had been led to believe about this all-too-common inflammatory disease.

According to the U.S. Centers for Disease Control and Prevention, 54 million people in the United States live with at least one form of arthritis. (As luck would have it, I have both osteoarthritis and rheumatoid arthritis — lucky me.) Arthritis is more common in older people: About half of people age 65 and older report having arthritis, compared to 7 percent of people under age 44 and about 30 percent of people between 45 and 64.

But just because arthritis is more common in older adults doesn’t mean it’s okay to dismiss it when it strikes younger people.

Truth: Most people don’t understand what rheumatoid arthritis is. RA is not old, creaky joints. It is a type of autoimmune and inflammatory disease. It happens because my immune system is attacking my own body, causing swollen and painful joints and a host of other symptoms. RA most often strikes between the ages of 30 and 50, says the American College of Rheumatology, but it can start at any age.

And as hard as it is to live with rheumatoid arthritis, living with the age stigma that surrounds it can be just as challenging. I’m constantly having to defend my condition against people who, because of my age, think that I’m “probably just sore.” I regularly have to convince a health care provider that they may have to run some extra tests or consider a different treatment because, yes, I have RA.

Telling anyone they are too young to live with a condition is more inflammatory than reassuring or supportive. Here’s why:

How Arthritis ‘Age-Shaming’ Affects My Health

It Makes It Harder to Find and Get the Right Care

There are many types of health care providers who can help you through your chronic illness journey — not just rheumatologists and primary care doctors, but also providers like chiropractors and acupuncturists, who help provide additional pain and symptom management. Unfortunately, not everyone knows what RA is or how its symptoms can affect you. Considering that arthritis is the number-one cause of disability in the world, it’s a shock that some health care providers aren’t as educated on it.

As a result, I’m often stuck educating the experts on rheumatoid arthritis — and that someone my age can have it.

It Causes Me to Question My Own Illness, Despite All the Medical Records

When people make comments about my age not matching my diagnosis, a million questions go through my mind — still, even after many years of living with this disease. Do they think I am exaggerating my conditions or self-diagnosing? Do they think it’s all in my head? Is this all in my head?

No, it isn’t. I have countless records of bloodwork, X-rays, MRIs, and ultrasounds telling me otherwise. I have a list of symptoms, and a longer list of medications, that match that of a person with rheumatoid arthritis. I have had specialists look me in the eye and tell me I definitely have seropositive RA. (Seropositive means that I have antibodies in my blood that are associated with my immune system attack itself. You can also have rheumatoid arthritis without such antibodies — this is known as seronegative RA.)

This is not my imagination; it is my reality. This is not me seeking attention; it’s me seeking relief and help for a valid reason.

Whether it be my friends, my family, or my health care providers, I just want someone to believe me; to believe that my pain is real even though I’m not the patient they picture when they think of “arthritis.”

It’s Really Depressing

Imagine waking day after day with a lot of pain but not knowing the cause. You then learn you have a condition that has no cure and will likely get worse over time. Sure, there are treatments to ease the symptoms and slow disease progression, but you’re basically stuck with this disease for the rest of your life. Then imagine being constantly reminded that because you’re young, you have even more years of pain to endure than someone who is older and “fits the part.”

That is my life: A constant stream of depressing reminders that that I have a lifetime of pain, fatigue, and illness ahead of me. Those reminders can send me down a spiral of self-pity and depression.

It Can Stall Crucial Diagnosis and Early Treatment

Telling someone they’re “too young to have arthritis” or “don’t look like they have arthritis” can impact their journey of healing, both physically and emotionally.

I went through a heavy period of denial when I was first diagnosed with rheumatoid arthritis. I kept thinking there must be something else wrong with me or that I was making it all up. A lot of this was because others tried to convince me I was too young and would be just fine.

Even some health care providers made insensitive comments that made me feel that I was out of place at the treatment facility; that I was taking up space, time, and costs that could be going to someone older and sicker.

This prevented me from accepting the severity of my disease and the medications I needed to take to prevent irreversible damage. It also led to a time of depression, which can have a significant impact on arthritis too.

Rather Than Questioning My Illness, Try Supporting Me Through It

Yes, it sucks being diagnosed with any illness at what many consider a young age. But instead of reminding someone of that, focus instead on showing them that you want to support them through this journey. There are a number of ways to support someone with a chronic illness, from educating yourself on their condition to avoiding toxic positivity.

And if you’re not particularly close to a person, you can simply say, “I’m sorry to hear. That must be really difficult for you.” Empathy for our situation is more appreciated than you could know.

Here’s How You Can Be Part of Arthritis Research

If you are diagnosed with arthritis or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

Arthritis-Related Statistics. U.S. Centers for Disease Control and Prevention. July 18, 2018. https://www.cdc.gov/arthritis/data_statistics/arthritis-related-stats.htm

How CDC Improves Quality of Life for People with Arthritis. U.S. Centers for Disease Control and Prevention. November 2, 2020. https://www.cdc.gov/chronicdisease/resources/publications/factsheets/arthritis.htm.

Rheumatoid Arthritis. American College of Rheumatology. March 2019. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Rheumatoid-Arthritis.

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