What People Ask Me About Living with Rheumatoid Arthritis

I tell people I have rheumatoid arthritis (RA), a lot. I’m a patient advocate and writer, after all. These positions require that I talk about RA, disability, and chronic illness often, occasionally on live TV or in public speaker engagements. I want people to understand my disease because there are many misconceptions and stigmas surrounding it. My disease has also made a massive impact on my life. In fact, it’s hard to not mention it because of the impact it has on me.

Sometimes people want to hear about it; sometimes people don’t. It really depends on the person, or where I’m discussing my disease. In my advocacy work, especially when I’m involved in arthritis research, the more open about my condition the better. However, when it comes to my social life, it’s a different situation. When I reveal I’m living with a chronic illness like RA, people tend to respond by either offering an empathic response, asking questions, or going awkwardly silent and changing the subject.

Then, of course, there are the people who instantly start to offer advice without asking you about your disease journey. Sorry Barb, I’ve tried turmeric and yoga.

In recognition of Rheumatoid Arthritis Awareness Day, held today on February 2, I wanted to answer some of the most common (and most bizarre) questions I get asked about living with rheumatoid arthritis.

What Is That?

I often meet people who don’t know what rheumatoid arthritis is, or they only hear “arthritis” and assume I’m talking about osteoarthritis. These are two very different diseases.

Rheumatoid arthritis is an autoimmune disease that starts off in your joints but isn’t limited to only your joints. RA is systemic, so it involves organs like  your heart, lungs, and kidneys. The main symptoms of the disease include pain, fatigue, weakness, cognitive dysfunction, and fever.

Does It Hurt All the Time? Are You in Pain Now?

Rheumatoid arthritis pain varies. If I’m in a flare, there is a good chance that I’m experiencing pain all the time. Where I have permanent joint damage, I will experience pain in those joints mostly when I overuse them. But the pain isn’t limited to my joints — it can also be felt through my related irritable bowel syndrome, muscle pain and headaches.

Many of those living with RA, like myself, have comorbidities, or other conditions that coexist with my autoimmune disease. For me, I also live with fibromyalgia, osteoarthritis, endometriosis, anxiety, and depression. It’s safe to say, yes, something does hurt somewhere all the time.

Aren’t You Too Young for Arthritis?

Yes, old people get arthritis. But so do babies, toddlers, children, young adults, and adults. I was diagnosed at 29, but I started showing signs of RA in my early 20s. While RA is commonly diagnosed between the ages of 40 and 60, that’s not the case for everyone. There are also juvenile versions of RA.

Which Joint Is Affected?

RA usually starts in the smaller joints of the hands or feet, but it’s not limited to those joints. RA can also impact the knees, hips, neck, and shoulders. What’s more, RA causes inflammation throughout the body that, over time, can damage organ tissues.

RA usually does not affect the spine, that’s spondyloarthritis, a type of arthritis that attacks the spine and, in some cases, the joints of the arms and leg. However, I also live with osteoarthritis, fibromyalgia, and poor posture, which all cause an achy back.

How Does that Affect Your Everyday Life?

RA can affect my daily life in different ways; for instance, if I’m dealing with fatigue, pain, cognitive dysfunction, or sleep problems. I’m also more susceptible to infection, so every day is a new day and a new challenge with rheumatoid arthritis.

To be honest, my biggest challenge with RA is the debilitating fatigue, which I can mostly expect every day. I do not experience chronic pain every day, especially if my disease is well controlled. Fatigue stops me from doing the things I want to and need to do. Some days, I can struggle just to have a shower and feed myself where other days I have the energy to tackle everything. If I do, I usually end up paying for overexerting myself a day or two later.

How Did You Know Something Was Wrong?

I knew something was wrong with me because I had pain and swelling in my hands and feet and my knees. I was told originally that it would go away after my pregnancy, but instead, it got worse. It wasn’t just the pain that caught me off guard but other red flags, including sleep problems, extreme depression, constantly being sick, cystic acne, feeling hot all over, and intense fatigue.

What Helps You with That?

My medications, eating healthy, regularly moving, pacing myself, managing stress, the sauna — there are many things that help me, but it can be different for another person living with RA.

Is It Fatal?

Now these are some scary facts about rheumatoid arthritis. While people do not die from RA, the disease can lead to serious complications that comprise our overall health. A person with RA may have a reduced life expectancy. Having RA makes you more likely to experience a serious cardiovascular event like a heart attack or stroke because those with RA are twice as likely to develop heart disease compared to someone without the condition.

Living with rheumatoid arthritis also puts you at greater risk for lung disease, cancer, stomach problems, other autoimmune conditions, and depression. Another big factor to consider is people with RA are more susceptible to potentially serious and even fatal infections.

But You Don’t Look Sick?

People mostly only see me when I’m well enough to go out, with my hair and make-up done and dressed out of my pajamas. Come over to my house on the days I am not feeling well enough to go out, and then you’ll see that I do look like a hot mess.

It Can’t Be that Bad?

Just because you can’t see it, doesn’t mean it can’t be serious. I also don’t need to be old for it to be debilitating. We need to step away from thinking arthritis isn’t a serious disease — it is.

How Do You Cope?

I enjoy a good cry every now and then but if I am crying for weeks on end, I reach out for mental health support. That can be through talk therapy, adjusting or starting medications, and facing what might be causing me so much grief. Regular self-management of my overall health helps me cope better all together.

Do You Have to Take Medications for That?

Definitely, I can barely function without them. I know some people think rheumatoid arthritis can be healed naturally, but not my kind. Medications help restore some of my life back from this ugly disease.

What Caused That?

The true cause of rheumatoid arthritis is not fully understood.

• Research suggests a genetic component may be a contributing factor. I have an aunt who suffered from rheumatoid arthritis 40 years before me.
• Smoking and secondhand smoke is also another possible contributing factor — my mother was a smoker throughout my entire childhood.
• Depression and trauma can bring out a variety of autoimmune diseases. I’ve lived with depression and anxiety for three decades.
• Environment, stress, infection, are other factors that might cause RA.

I try not to focus on why I have RA but rather what I do about having RA.

How Do You Stay Positive?

I don’t always. I am not a fan of toxic positivity and living with chronic disease sometimes just sucks. I won’t sugar coat it, some days I can’t stay positive and that’s OK, because it’s my real emotions and I shouldn’t have to cover them up to make others comfortable.

Have You Tried…Turmeric, Kale, Yoga, Sitting in Radium Caves?

There is a lot of misinformation out there surrounding arthritis and other chronic illnesses. I mean a lot. I’ve heard the major ones — try this diet, try this supplement, try this lifestyle — as well as some really bizarre suggestions like how my RA would be cured if I sat in radium caves or drank sea water.

The truth is, I stick to what my health care professionals say and advice from other patients in my community.

Have You Tried [Insert Recommendation] — It Cured My Friend

Not all arthritis is the same. Rheumatoid arthritis has no cure. Someone’s rheumatoid arthritis may go into remission, which rarely happens without medications and there is still risk of the disease coming back. The variety of RA I have is considered moderate to severe, so the chances of me reaching remission is lower than someone with mild to moderate RA.

What Do You Want People to Know About Arthritis?

Being an experienced arthritis advocate, the media loves to ask me what I want others to know about rheumatoid arthritis. It really comes down to one major thing: The disease is serious, and I wish those who don’t experience it would understand this and the impact it has on your daily life.

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.