Rheumatoid arthritis (RA) is a disabling disease that affects the joints with pain, swelling, and stiffness. RA is a systemic disease which means it can have an impact on a person’s entire body, and may even impact one’s sense of wellbeing.
RA often results in a gradual limitation of normal activities because the joint damage and symptoms that occur with it usually progress slowly over time. When those who don’t know they have RA feel pain or stiffness, they naturally try to avoid what makes them hurt. They may first start by changing their schedules (such as stopping early morning exercise or getting to work later), changing what they do (reducing physical activity, switching chores to lower impact ones or avoiding activities they enjoy because it makes them hurt), or reducing activities because they may not want to ask for help. Eventually, people with RA may start to withdraw, cut back on social activities, and even reduce their work hours. Some patients, with or without appropriate intervention, may even feel the need to quit their job due to limited mobility. This effect can have emotional, social and economic consequences for patients and their families.
Getting Care for RA
As a rheumatologist, I have seen many patients with RA who believe that they must endure painful symptoms on their own, often because they are embarrassed to say that they are in pain or because they feel that their pain is a part of the normal aging process. Some patients give up on life the way they’ve lived it before because they are no longer able to hold onto a zipper or button a shirt. But, for many, when RA is appropriately diagnosed and treated early on, it may be possible to put RA symptoms into remission or a very low level of disease activity so that RA sufferers are able to get back to living a relatively healthy and normal life.
So, the first and most important thing for someone with RA symptoms, such as tender, sore, stiff or swollen joints, is to see a doctor who can offer a proper diagnosis—in most cases, a rheumatologist. There are RA treatments that can help to control symptoms. In fact, the goal of RA treatment is to get the patient to a state of clinical remission, that is a total absence of symptoms; if this is not possible, then the lowest level of disease activity. While this doesn’t always happen, many people who are treated early on may be able to get to a state of low or very low disease activity.
Don’t Suffer Alone
Living with RA may not always be easy. When the symptoms take away the ability to do the things a person takes for granted such as personal grooming or turning a door knob, this may lead to embarrassment and shame. It is not surprising that some people with RA (especially during flare-ups) become withdrawn or feel depressed.
I encouraged my patients to keep a journal and write down their feelings, thoughts, and reactions to the difficulties they are having living with RA. I have found that this is a very effective way for patients to get some psychological or emotional relief. The idea is to help them become aware of the issues they are facing and to feel less burdened by their worries. It may also help to find someone trustworthy to talk with about their thoughts and feelings.
Your doctor is always a good place to start for discussing your concerns about your illness and mood. But there are also social workers, psychologists and psychiatric professionals, who are well trained in helping people with chronic illness when mood becomes a problem. My patients also reported that support groups can be very helpful. It can be comforting to meet people who have similar challenges and who can share insights on how they cope with RA.
You can find information about local support groups by contacting your local Arthritis Foundation chapter. Connecting with other people who have RA may be difficult if you live in remote areas, but there are also many online communities and forums. It can help to find out more about RA support groups.
Caregivers and Family Members
Families with a loved one who has RA may have a hard time understanding what their loved one is going through. If a patient is willing, I encourage caregivers and family members to join the conversation during routine medical visits. Most RA doctors are willing to answer family members’ questions and even explain what is happening physiologically and emotionally to the patient.
For instance, I might explain to a patient’s young children that their mother or father is not abandoning her or his duties, but instead, is just not able to do a lot of normal things that the rest of the family can do easily. This becomes an opportunity to engage everyone (kids and young adults) by letting them know they can play an important role by pitching in more, and more readily supporting their loved one on the RA journey. If you are comfortable, ask those close to you to be part of a conversation with your doctor.
Raising Awareness to Break Isolation
Every day, I wear a lapel pin that has a fork with bent tines, which I received from the RA public awareness campaign called "Simple Tasks". The campaign is sponsored by the American College of Rheumatology and is meant to bring awareness about the challenges of people living with RA. The symbol of the fork stands for a debilitated hand—it stands for the people with RA who have difficulty doing simple tasks, like picking up a fork, or zipping a zipper, or making a fist.
You can get involved in this campaign by learning all you can about RA and helping others to understand it too. Breaking the secrecy and discussing your own challenges with RA may also help to end the social isolation that often goes along with this debilitating disease.
Andrew Koenig, D.O., F.A.C.R., is a rheumatologist and the Inflammation/Immunology Group Lead for North America Medical Affairs at Pfizer, Inc.