Brenda, 60, is in rheumatoid arthritis remission—but her journey to this point has been winding. After experiencing painful and swollen joints for several months, Brenda was diagnosed with rheumatoid arthritis in 1991 when she was 31. As the Centers for Disease Control and Prevention (CDC) explains, rheumatoid arthritis is an autoimmune disease in which your body’s immune system attacks healthy joints (and sometimes other tissues), resulting in inflammation in the lining of the joint. This in turn causes painful swelling like Brenda had.
In the long term, rheumatoid arthritis can cause chronic pain and affect balance and can cause joints to become misshapen. In addition to swollen joints, other symptoms of rheumatoid arthritis include pain, aching, tenderness and/or stiffness in one or more joints, often the same ones on both sides of your body, as well as fatigue, unintended weight loss, and fever.
The intensity of these symptoms can vary over time, and people with rheumatoid arthritis sometimes go through extended periods without experiencing any symptoms. Tests can also show how much inflammatory activity is happening in the joints, and it’s usually on the basis of these two factors—how the patient feels and the disease activity—that doctors can pronounce that the disease is officially in remission, although there is no one set of criteria to determine this.
In August 2020, Brenda learned that her rheumatologist had determined that she’d been in remission for most of the year, based on a lack of inflammation in the connective tissue lining her joints. It was bittersweet: Many of her symptoms had lessened, but she still experiences some pain and fatigue, and she knows that there’s a chance that the symptoms will start again. But Brenda is determined to focus on the positives. Here’s her story about living with rheumatoid arthritis that’s currently in remission.
I’ll never forget the day I found out I had rheumatoid arthritis. It was a Wednesday in May 1991, and I was 31.
I’d known something was wrong for a while. The year before, I’d started having problems with my feet. My ankles would swell up. I thought I just needed good shoes, but then it started to affect my fingers and my wrists.
What finally drove me to the doctor’s office was a bad bout of bursitis—inflammation of sacs called bursae that cushion the joints—in my shoulder. The doctor on call had the presence of mind to do a rheumatoid factor test, which tests for a type of protein that your immune system produces that can attack healthy tissue. My levels were sky-high, but it still took another few months to get a diagnosis. Finding out I had rheumatoid arthritis almost felt like my life was over.
Things that I used to think of as simple became so hard. I couldn’t stand to wash dishes, so I found a stool; my mother made me a cushion that I could slip onto it to make it more comfortable. Opening jars, lifting things, and shopping for groceries was really difficult—we didn’t have delivery back then. If I sat down too long, I wouldn’t want to get up because I knew it was going to hurt so bad to try to stand.
I had friends who helped me, but I’m the type of person that didn’t want people to know. I just powered through and didn’t say much, although you could tell something was wrong. For one thing, I was afraid of losing my job. I work in the medical field, and I really enjoy it. You have to be a detective sometimes and I love that—I love mysteries. I really did not want to quit my job at the age of 31. It didn’t help that a doctor once told me, “Why don’t you go on disability and have your husband take care of you?” I said, “I am the full breadwinner. And I will work until I can no longer do it.” That was in 1991, and 2020 marked my 33rd year working full-time for my employer.
Working in the medical field for over 30 years helped me navigate health care appointments for my rheumatoid arthritis. I’m not afraid to ask if I need a test, and if I think that something needs to be looked at, I’m not shy: I ask. The patient has a right to do that, and I have a very good relationship with my health care team.
After years of trying different medications that I couldn’t tolerate for long periods or that didn’t work for me, including methotrexate and NSAIDs, I started taking a biologic in 2001, 10 years after my diagnosis. I’m still on it. For me, it’s been a life-changer. I think it’s the reason I’m still able to work full time, which in turn keeps me going.
What also helped was finding a community who understood what I was going through. In 1991, the only way I could see how people handled living with rheumatoid arthritis was by watching VHS tapes from the library. I didn’t know anyone else with arthritis when I was diagnosed, or anyone else on my treatment. I wanted to talk to somebody else and see how it was going for them, and share my great experience with people.
For years, it felt like no one understood. If I tried to talk to someone about the pain and the obstacles I was facing, people accused me of being negative. I needed to find people who were uplifting.
In 2002, I discovered CreakyJoints, a community for people with arthritis. Meeting other people online in the chat room and later on the Facebook page was really helpful, and I started reading the monthly newsletter. Although I’m naturally a shy person, I wanted to get more involved. I edited the poetry section of the newsletter for three years, helped put together a book in 2017, and became one of the first members of the patients’ council. We meet monthly and work on pamphlets to help raise awareness, especially about the mental health side of living with arthritis. I really want people to know that if you’re having a hard time coping, it’s OK to find somebody to talk to. You don’t have to go this alone. There are people out there just like you. And when you reach out for help, you’re not only helping yourself, you’re helping others as well.
As hard as rheumatoid arthritis can be, I’ve always had hope. In 2020, I started noticing that I was feeling better. Things like getting dressed, which could be absolute agony, were easier. I started seeing a new rheumatologist in February, and after a check-up in August, I found out I was in remission. I thought, ‘I’m in remission?’ I was shocked—it was awesome!
Being in remission from rheumatoid arthritis is almost like being given a gift. I was briefly in remission 10 years ago, and even though it only lasted a couple of months, I always said it could happen again: I never gave up hope. I’m hoping it will last longer this time.
I’m very aware that I still live with rheumatoid arthritis. It hasn’t suddenly gone away, it’s just that things are quiet right now. I still experience fatigue and I still live with pain. I have joint deformity from before I started taking the treatment I’m on, and that will never be fixed. But I haven’t had very bad days since remission. I still have to be vigilant and keep taking my medication, and keep doing all the things I’ve been doing to stay healthy. Exercise is very important; I walk half a mile to and from work most weekdays, even in the winter! I also know when to rest, especially since I’m more vulnerable to infections on the medication.
Attitude is so important, too. When you have rheumatoid arthritis, not every day is going to be great. But I find that if you can bring humor, even when you’re in pain, it can at least get your mind off of it for a little while. And don’t ever give up hope. I trust scientists, and just look at the drugs that are out there now, and the ones that are still being developed. I’ve lived with the disease for a long time, and I want people to know that I’m proof that remission can happen—and it’s great.
This interview has been edited and condensed for clarity.