Opening Up to Other People About Rheumatoid Arthritis

Rheumatoid arthritis (RA) is a lifelong condition that involves joint pain, stiffness, and other symptoms that can interfere with daily life. For example, people with this condition often struggle to get up and move in the morning, and it can be hard to do chores and participate in fun activities. This can lead to people with RA feeling like they need to explain to others what it is like to experience their symptoms and how it affects their life.

Learn more about why it is hard to open up about RA and how to overcome the challenge to have good, meaningful conversations.

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Why It’s Hard to Open Up About RA

Some people with rheumatoid arthritis struggle with self-esteem (how they see themselves) because of RA, fear how it will be seen by others, and may be reluctant to talk about their condition. However, it is important to communicate with others to help build a support system and strengthen relationships.

Rheumatoid arthritis can impact relationships with friends, fmily members, coworkers, employers, romantic or sexual partners, and children

Why Is It Difficult to Share?

Some reasons people with RA may struggle to share their experiences with others include:

  • Fear of how others will react or view them
  • Low self-esteem or embarrassment about RA
  • Unsure of what to say or how to say it
  • Too tired or emotionally drained to talk about it
  • Not wanting to be thought of or treated differently

Misconceptions

There are a lot of misunderstandings or misconceptions about RA. For example, some people without RA think the condition is temporary and will go away. This can make it harder for people with RA to talk about their experiences because they feel as if they need to explain and educate others to change beliefs that are not accurate.

Other common misconceptions about RA include:

  • Pain and joint stiffness are the only symptoms.
  • Hands, fingers, and wrists are only areas affected.
  • Symptoms are minor and do not interfere with life.
  • Only older adults are affected.
  • All types of arthritis are the same.
  • It is a normal part of aging.

A Systemic Disease, Not Just Joints

Many people think RA is just stiff, painful joints. While that is part of it, there is more to it. RA is an autoimmune disease that affects the entire body. For example, many people with RA experience extreme fatigue. It can be similar to the extreme weakness and run-down feeling that comes with being sick with a seasonal bug, except it lasts much longer and continually comes back.

What Is an Autoimmune Disease?

An autoimmune disease is when the immune system mistakenly attacks healthy cells. Other types of autoimmune diseases include lupus, ankylosing spondylitis, vasculitis, Crohn's disease, celiac disease, and multiple sclerosis.

Symptom Unpredictability 

Symptoms of rheumatoid arthritis are not always consistent. People with this condition may experience symptoms that come and go, or they may have flares, which are periods when symptoms worsen. This means they can feel fine or mostly fine one day and then be overwhelmed with pain, fatigue, or other symptoms the next day.

When symptoms come and go, they impact what people with RA may be able to do from day to day. For example, they may be able to exercise and do fun activities one day, but struggle to walk short distances the next. This may be hard for someone without a chronic illness to understand.

Immunocompromised: Defined

"Immunocompromised" is a term used to describe a person who has a weakened immune system. This can happen when people have an autoimmune disease or are undergoing certain medical treatments such as immunotherapy or chemotherapy for cancer treatment.

People who are immunocompromised:

  • Are more likely to get sick
  • Have a more difficult time fighting infections
  • Often experience more severe symptoms when they do get sick
  • Need to be more careful not to get sick

Explaining RA to Your Employer

People with RA may not want to talk to employers about it for fear of being treated differently or having negative effects. This concern is understandable, but there are laws to protect people with medical conditions from discrimination at work. Additionally, many employers, such as companies with at least 15 employees, must accommodate the needs of people with disabilities.

Consider the following when talking to employers about RA:

  • Learn about the laws related to employment and medical conditions in your state.
  • Talk with your human resources (HR) personnel, if available at your place of work.
  • Think about what type of support would help at work.
  • Talk with a medical professional before proceeding.

But It’s OK to Not Say Anything

Medical history and medical conditions are personal and can remain private. There is no requirement to share with others. Sometimes people with RA require or could benefit from special arrangements at work, such as extra breaks or flexible schedules. These arrangements can be made without employers knowing the details of your medical condition.

Sharing Is Optional

If RA does not affect your work and no arrangements need to be made, it does not need to be discussed at all. However, people may choose to talk about it.

Communication Strategies and Support

It is not necessary to tell everyone about RA, especially not right after diagnosis, but telling close friends and family members can be helpful for support. Everyone is different and has different comfort levels. This means some people are comfortable being very open about it, while others are more private.

Communication Is Personal

It is important for each person to do what is right for them, and there are many options to choose from.

Share Your Treatment Journey

Sharing a personal journey can be intimidating, but there can also be benefits. Sharing can be done through talking or writing. As an added bonus, writing about stresses and other aspects of RA is a form of therapy and can have physical and mental health benefits.

Being open about what it is like to have a lifelong health condition can help to:

  • Bring awareness to others who have not had a similar experience.
  • Build a stronger network of support.
  • Help others know how to support.
  • Provide physical and mental healing.

Ask for Help 

One of the common struggles with autoimmune diseases like RA and other long-term health conditions is the change in support over time. Many people find that family and friends are more supportive at first, but less over time. This may partially be because they don't understand life with a long-term illness.

When family, friends, and others are less supportive over time, it can help to:

  • Explain what it is like to have a long-term illness.
  • Express the need for continued support.
  • Provide examples of how they can be supportive.

Embrace Your New Lifestyle

Life with RA may not go back to how it was before RA. However, it is still possible to live a full, happy life. It may just be different, and it may require some changes. To live well with RA, it is important to learn what helps and work with medical professionals to develop a plan and then to prioritize healthy lifestyle changes.

With rheumatoid arthritis, it is still possible to:

  • Socialize and have strong relationships with friends and family
  • Have hobbies and take part in fun activities
  • Live independently
  • Work and have a career
  • Be physically active and emotionally healthy

Dating and Intimacy with RA

Rheumatoid arthritis can make dating and intimacy more challenging. Physical symptoms of RA, along with emotional and social effects, can interfere with relationships and sex.

Some things that can be challenging with dating, relationships, and intimacy include:

  • Difficulty communicating and understanding what it is like to have RA
  • Symptoms like fatigue, pain, and decreased mobility
  • Symptoms of decreased sex drive and painful sex
  • Mental health challenges, such as an increased rate of anxiety and depression
  • Decreased self-esteem and confidence

Despite the challenges, it is possible to have healthy romantic relationships with physical intimacy.

Some things that can help when facing dating, relationship, and intimacy challenges include:

  • Talking to healthcare professionals about managing symptoms
  • Couples therapy to help with communication and conflict resolution
  • Treatment of mental health conditions that occur with RA
  • Coping methods to build self-esteem and confidence

What to Say If You’re a Parent

Children of people with RA are impacted by the condition, too. Like other family members, children without chronic illnesses may struggle to understand what it is like to live with a lifelong condition. Even more than adults, children may not understand why a parent is able to be active one day and physically unable to play with them or take them where they want to go the next day.

It is important to be honest with children about living with RA and use it as a teaching opportunity to show them how to care for themselves.

Some tips for talking with children about RA include:

  • Reassure them that they will get the care they need.
  • Explain to them what it is like to have RA.
  • Give them opportunities to ask questions and answer honestly.
  • Discuss the healthy lifestyle choices made to manage the condition.

RA Patient Resources 

There are many resources available for people living with RA. These resources can help support the physical, emotional, mental, and social aspects of the condition. Some involve professional support, while others can be accessed independently from home. For example, there are educational materials for healthy lifestyle changes like nutrition.

Resources for People with RA

Some resources available to people with RA include:

Benefits of Talk Therapy

Psychotherapy (talk therapy) can help people living with rheumatoid arthritis. This is a conversation-based method of therapy to address the challenges associated with RA, including physical, mental, and social challenges. For one, cognitive behavioral therapy (CBT) is a type of talk therapy that has been found effective in helping people with RA reduce pain and adapt to healthy lifestyle changes that relieve symptoms and improve wellbeing.

Benefits of talk therapy for people with RA include:

  • Mental health support for depression, anxiety, and other conditions that occur with RA
  • Support for couples facing relationship challenges
  • Management of symptoms such as pain and fatigue
  • Stress reduction and relaxation
  • Support with adapting to healthy lifestyle changes
  • Communication techniques for talking with friends, family, employers, and others

Summary

Rheumatoid arthritis is a lifelong condition that includes symptoms such as pain and fatigue. It can impact all areas of life, including work, leisure time, and relationships. People without chronic illnesses may find it hard to understand what it is like to live with RA, and there are many misconceptions, which can make it hard for people with RA to open up about it. It is OK not to talk about RA, but there are benefits of finding a way to communicate, such as increased support from those around you.

A Word From Verywell

Being diagnosed with and living with RA can be challenging, especially when facing difficulty talking about it with friends, family members, and others. If you or someone you know has or suspects RA, help is available. Reach out to a healthcare professional such as a primary care practitioner, rheumatologist, or mental health professional for support. It is possible for people with RA to live full, happy lives with strong, supportive relationships.

Frequently Asked Questions

  • Do RA patients struggle with mental health?

    People with rheumatoid arthritis are at an increased risk of mental health conditions. However, that does not mean that everyone with RA struggles with mental health. Additionally, there are treatments and ways to cope with mental health challenges along with RA.

  • Is there any risk in telling your boss about your RA?

    There are laws to protect people with rheumatoid arthritis and other physical and mental health conditions from any possible discrimination related to health. Even so, some people may be reluctant to share information related to health with bosses and coworkers. This is OK, and if it is not affecting your work, then it does not need to be discussed. Additionally, special accommodations may be possible without sharing the details of the health challenges.

  • How do RA patients describe fatigue?

    People with rheumatoid arthritis may describe the fatigue as making them extremely tired physically, overwhelmingly rundown, or exhausted to the point of not being able to function physically or mentally. It can affect the body, mind, or both. For example, some people may feel as if they are unable to think straight, or they may be unable to get out of bed in the morning.

15 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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  7. Arthritis Foundation. Working when you have arthritis.

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  11. Arthritis Foundation. How to live well with arthritis.

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By Ashley Olivine, Ph.D., MPH
Dr. Ashley Olivine is a health psychologist and public health professional with over a decade of experience serving clients in the clinical setting and private practice. She has also researched a wide variety psychology and public health topics such as the management of health risk factors, chronic illness, maternal and child wellbeing, and child development.