How to Tell Your Loved Ones About Your Rheumatoid Arthritis Diagnosis

Rheumatoid arthritis (RA) is a lifelong condition that can affect every aspect of your life, including work, home, and social life. It can also affect your closest relationships, especially when you don’t share information about the disease’s effects or when loved ones don’t understand your daily struggles.  

Having information about RA — the basics, its day-to-day effects, the role of treatment, the reality of the future, and more — helps your loved ones appreciate the impact of RA. Of course, it’s normal to have reservations about sharing health information. But you only need to share details you’re comfortable sharing.  

Start with the Basics 

People who have never heard of RA might think it’s similar to osteoarthritis (OA), which involves the loss of cartilage between joints and occurs as people age. And while OA can cause joint damage and disability, it is not an autoimmune disease. That means its course of progression and effects on the body differ from RA. 

“RA is an autoimmune disease,” says Dee Dee Wu, MD, a rheumatologist at Hospital for Special Surgery. “That means the immune system, which under normal circumstances protects you from infection, mistakenly sees one’s healthy tissue as foreign and attacks it. With RA, the target is the joint lining, or synovium, which results in joint inflammation or synovitis. Signs of inflammation include pain, swelling, redness, and warmth.” 

Loved ones might ask how common RA is, and it is a relativity common severe disorder. According to the National Institutes of Health, it is one of the most common systemic (whole-body) autoimmune diseases affecting about 1.5 million people or about 0.6 percent of the U.S. adult population. “RA accounts for a significant portion of the autoimmune diseases that we see in rheumatology practices,” says Dr. Wu. 

Talk About Day-to-Day Effects  

Joint pain and swelling, fatigue, dry eyes, and dry mouth are common symptoms of RA. These symptoms affect and limit what a person with RA can do. Most people, especially those with long-standing disease, will experience symptoms of RA daily.  

Loved ones may not always understand that symptoms of RA can change throughout the day. “Symptoms are typically worse in the morning,” says Dr. Wu, “and people with inadequately controlled disease will experience prolonged morning stiffness that improves over the course of the day as you use the joints.” 

RA runs the whole spectrum, from mild to severe disease,” says Dr. Wu. “RA can oftentimes affect handgrip strength and dexterity because the hands and wrists are frequently involved.”  Hand dexterity refers to a person’s ability to use their fingers, while grip strength affects one’s ability to hold onto objects firmly and securely. 

“The frequent hand and wrist involvement in RA means that patients often struggle with activities of daily living,” says Dr. Wu. “Tasks like opening jars, turning doorknobs, turning a faucet, gripping and grasping become harder. RA also affects the fine motor skills of the hands, so patients may have difficulty unfastening buttons or fastening jewelry.” 

According to a 2018 study published in Advances in Rheumatology, grip strength in people with RA can significantly decrease over time and even within the first five years. Grip struggles can also affect people experiencing disease remission or with limited disability. RA remission means a well-managed disease with few or no symptoms.  

Dr. Wu shares that assistive devices can be helpful for the performance of daily activities. She adds that “an occupational therapist can help someone with RA determine what assistive devices can help with household tasks and activities of daily living.”   

Assistive devices that might be helpful for someone with RA include jar openers and electric can openers for use in the kitchen and aids for getting dressed, such as shoe and sock aids and button and zipper hook pulls. 

Ask Loved Ones for Help 

Loved ones may not see outward signs of the disease. “It is important for family members to understand that sometimes there may be fatigue or associated conditions such as fibromyalgia or Sjogren’s syndrome, which may further affect one’s ability to meet responsibilities and commitments, “says Dr. Wu.   

Your family and friends will need you to tell them if you need support throughout the day because of pain, fatigue, stiffness, and other disease symptoms they cannot see. And there are plenty of things that loved ones can do to help you.   

For example, if you struggle with pain and stiffness in your hands, you might ask your partner to prepare dinner or your older child to help with household chores. Or, if you are experiencing severe fatigue, ask a family member or friend to pick up a child from school. 

Be Honest with Your Partner 

RA can easily make its way into every aspect of your life, including your relationship with your significant other. RA symptoms can make everyday life, even sex, more challenging.   

“Hopefully, partners are sympathetic to the fact that some patients with RA suffer from chronic pain which can affect mood, energy, and outlook,” says Dr. Wu. “Chronic pain can also reduce libido in both men and women. All of these things can definitely create issues in a relationship.”  

RA joint pain and stiffness limit mobility, while fatigue can decrease your sex drive (libido) and make you feel too tired for sex. RA might also lead to depression and anxiety, further interfering with sex drive. And some people with RA might struggle with body image, which can lead to more disinterest in sex. 

According to a report in the World Journal of Orthopedics, RA inflammation can cause erectile dysfunction in men and vaginal dryness in women. Difficulties with libido and orgasm are also common in people with RA.  

 Because RA can affect so much of a person’s life, it is crucial to work closely with your doctor to manage its effects. “Poorly controlled disease can result not only in chronic joint pain and disability,” says Dr. Wu, ”but may also be associated with constitutional symptoms fatigue, malaise, loss of appetite, and weight loss, which can affect intimacy.” 

Look Forward to a Bright Future (Together) 

Your significant other, children, friends, and close family members do not know how medications and other treatments can ease symptoms and slow down the disease’s effects, so it’s up to you to explain how there are medications that help make it possible for many people to go about your day, work, and care for loved ones — although it might require some trial and error.

“Ultimately, RA might not be curable, but it is treatable, and the goal is always remission,” says Dr. Wu, who tells his newly diagnosed patients that the future is “much brighter now than before because there are so many effective treatment options,” she says. “Biologics have revolutionized our ability to treat RA patients, and the treatment paradigm has shifted over the years so that we now treat patients early and aggressively when clinically warranted.”  

Choose to Be Mindful  

Everyone deals with information about the health of loved ones differently. And information about RA disease effects and treatment might be overwhelming for some people.  

Consider an honest but favorable approach for loved ones who struggle with making sense of your disease or may not be as understanding. You might take a basic strategy approach and share that RA is a lifelong condition without a cure. And it is treatable with medications that can keep it from getting worse, manage symptoms, and reduce the potential for disability.  

You get to decide how much to tell friends and family about RA. And while sharing the effects of RA and your health can make you feel vulnerable, remember that loved ones only know what you tell them. But the more you share, especially within your inner circle, the more support and understanding you can receive as you learn to better manage and thrive with RA. 

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