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11 Things People Wish They Knew When They Were Diagnosed With Rheumatoid Arthritis

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The moment your doctor first said the words “rheumatoid arthritis,” a million questions probably went through your head. What does this mean for my future? Will I be able to work or raise a family? Will I ever feel like I did before my symptoms began?

Rheumatoid arthritis (RA) is an autoimmune disease in which the body’s immune system mistakenly attacks the joints and other parts of the body. This causes painful inflammation in the joints as well as the eyes, mouth, skin, lungs and blood. Other symptoms include fatigue, stiffness and low-grade fever. There is no cure, but there are several medication options and lifestyle habits that can help (such as diet, exercise and reducing stress).

Every person with RA has a unique experience, and not even a doctor can tell you exactly what your journey will entail. But sneaking even a glimpse of what other RA warriors have experienced and learned since they were diagnosed can help you feel more prepared for the roller-coaster ride of RA.

We asked our Mighty RA community to share what they wish they knew when they were diagnosed with RA — bits of knowledge that might have made their path a little less bumpy, or that would have reassured them and shown them that what they’re feeling is completely normal. Consider the following list your RA cheat sheet. If you’ve just been diagnosed, you’re now ahead of the game.

1. RA is about more than the joints.

Because RA includes the word “arthritis,” many people assume the condition only targets the joints. However, RA is an autoimmune condition that causes inflammation not only in the joints, but other body systems as well, including the eyes, skin, mouth, lungs, heart, and blood. Fatigue and low-grade fever are also common.

“[I wish I knew] how many other things apart from joints are affected. I really thought it just meant having a few stiff joints like you normally hear about arthritis but it’s so much more than that, it affects almost everything.” — Natalie P.

2. Young people can get RA, too.

Again, because of its association with arthritis, people often dismiss kids who exhibit RA symptoms. Doctors might have told you your symptoms were just “growing pains” or misdiagnosed you with another condition. Not only is it possible to develop RA as a child or teen, but it’s also common enough that there’s a name for it: juvenile idiopathic arthritis. An estimated 300,000 kids and teens in the U.S. are affected by JIA, according to the Arthritis Foundation.

“[I wish I knew] that young people could get it too. I kept being told I couldn’t have those issues because I was ‘too young for that’ and I ended up internalizing that idea. I wish someone told me illnesses don’t care whether you’re young or old, they’ll still get you.” — Nicole S.

3. Medications can dramatically affect your symptoms.

Some people find that with the right medications, their symptoms are drastically reduced, giving them the ability to lead a relatively “normal” life. On the other hand, certain medications can have absolutely no effect or make you feel worse. The point is, it’s important to take medications seriously. Don’t stop taking them without a doctor’s approval, and know that if a certain medication isn’t working for you, there may be another that will work.

“I wish my doctor had expressed the severity of everything and that if we found the right med combo that I had a chance to go into remission. Twice I quit the meds due to side effects and I wish a nurse or someone had called me and told me the importance of the meds and staying under a doctor’s care.” — Meredith I.

4. A less-discussed symptom of RA is fatigue, and it’s so much more than “being tired.”

Many people with RA find that fatigue affects their quality of life just as much as the joint pain. Fatigue can make you feel like you’ve run a marathon even though it’s only noon and prevent you from working, spending time with friends and exercising. People who don’t live with chronic illnesses may think you’re “just tired” and will feel better after a nap, but fatigue typically isn’t resolved with a few extra hours of sleep.

“Not everybody will understand about the rest days or the fatigue that strikes.” — Julie R.

“[I wish I knew] that I would experience unpredictable episodes of extreme fatigue that extra rest and/or sleep will not cure.” — Genevieve M.

5. Healthy lifestyle habits aren’t a cure-all but can have a positive impact on your well-being.

Lifestyle habits don’t cause RA, and changing up your eating or exercise habits won’t cure it. However, some find that eating a well-balanced, anti-inflammatory diet, quitting smoking, prioritizing sleep, reducing stress, and staying as physically active as possible helps minimize their symptoms. Talk with your doctor about strategies that make sense for your body.

“Growing up I wish I had known more about implementing a healthy lifestyle (eating the right foods, staying in shape, etc.) when I was younger and it wouldn’t be as hard now.” — Montana F.

6. RA is not your fault.

Let’s say it together: You did not cause your RA! In fact, scientists still don’t know exactly what causes RA, though factors like gender, age and family history can contribute. Rather than spending energy feeling guilty about what you “must have done” to “cause” your RA, it’s more productive to focus on managing the condition as best you can.

“[I wish I knew] that other kids had JRA as bad as I did, and that having the disease wasn’t my fault.” — Alyson K.

7. You can have RA and not test positive on the diagnostic tests.

There are a few blood tests physicians use to help diagnose RA. These tests look for the presence of antibodies that signify you have high levels of inflammation in your body. These tests include rheumatoid factor, anti-CCP, ESR and CRP. These tests, combined with your symptoms and imaging scans, contribute to an RA diagnosis. However, just because you do not test positive for RA, does not necessarily mean you don’t have it. If you still exhibit the symptoms of RA, you might have seronegative RA, which means you don’t have the antibodies that usually indicate seropositive RA. Make sure you see a rheumatologist who understands this possibility (as well as the possibility of testing positive for RA, but actually having a different autoimmune disease like Sjogren’s syndrome).

“Wish I knew my bloodwork didn’t have to be positive to RA.” — Danielle F.

8. It’s not uncommon to be diagnosed with other autoimmune conditions, too.

If you have one autoimmune disease, you are at risk for developing another (or two). Experts think genetics may be at least partially to blame since one gene could be linked to several different autoimmune diseases. Exposure to environmental factors could be another trigger. About 25% of people with autoimmune diseases have a tendency to develop additional autoimmune diseases, according to research.

“[I wish I knew] that I could be more prone to other autoimmune diseases as well. I am at three now.” — Dani L.

9. RA medications can lower your immune system.

Since RA causes your immune system to attack healthy tissues, some drugs treat RA by targeting the parts of the immune system that cause inflammation. As a result, a common side effect is a weakened immune system and greater susceptibility to illness since you’re less able to fight germs.

If you’re taking medications that lower your immune system, you’ll want to take steps to avoid coming into contact with germs; for example, by frequent hand-washing and staying away from people who are sick.

10. RA is a life-changing diagnosis.

If anyone suggests that RA is “no big deal” or can be “easily cured,” they must not know anyone living with RA. Far more than “just” joint pain, the condition often forces you to limit or alter activities you used to do with ease. It’s only natural to experience some anxiety and/or depression while you come to terms with your diagnosis. There’s no shame in reaching out to friends, family, therapists and/or online support groups for help.

“I wish I knew my life was going to change completely. Most people don’t understand what RA really does to a person. I have found people that think and they have told me that RA is curable. It’s very frustrating trying to explain them. They think they know more than my rheumatologist.” — Janeth G.

11. A good rheumatologist is essential.

No two people with RA are exactly alike, and one medication can work amazingly well for one person and have no effect on someone else. That’s why it’s important to find a rheumatologist who is willing to try different treatment options and approach your relationship as a partnership. “Settling” for the first rheumatologist you meet, even if they aren’t enthusiastic about finding the best treatment for you, could mean you miss out on helpful disease management strategies.

“I wish someone would have told me that a relationship with my rheumatologist was a beneficial step in my care. Finding a rheumatologist who believes we are a team and hears me out is so important to my overall care. Knowing me as a person and not just a patient humanizes my appointments.” — Elaine W.

Check out these stories for more insight on RA from our Mighty community:

Originally published: January 30, 2020
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