Working in the medical field for over 30 years has 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 something needs to be looked at, I’m not shy: I ask. The patient has the right to do this and I have a very good relationship with my health care team.
After years of trying different drugs that I couldn’t tolerate for long periods of time 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 changed my life. I think that’s why I can still work full time, which keeps me going.
What also helped me was to find a community that understood what I was going through. In 1991, the only way I could see how people lived with rheumatoid arthritis was to watch VHS tapes in the library. I didn’t know anyone else who had arthritis when I was diagnosed, or anyone else during my treatment. I wanted to talk to someone else and see how it was going for them, and share my great experience with people.
For years, I had the impression that no one understood. If I tried to talk to someone about the pain and the obstacles I was facing, people would accuse me of being negative. I needed to find people who were uplifting.
In 2002, I discovered Squeaky joints, a community for people with arthritis. Meeting other people online in the chat room and later on the Facebook page was very helpful, and I started reading the monthly newsletter. Although I am naturally a shy person, I wanted to get more involved. I edited the poetry section of the newsletter for three years, participated in the production of a book in 2017, and became one of the first members of the patient council. We meet monthly and work on brochures to help raise awareness, especially on the mental health aspect of living with arthritis. I really want people to know that if you are having a hard time coping you can find someone to talk to. You don’t have to go alone. There are people like you. And when you ask for help, you are not only helping yourself, you are also helping others.
As hard as rheumatoid arthritis can be, I have always had hope. In 2020, I started to notice that I was feeling better. Things like dressing, 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 that I was already in remission. I thought, am I in remission? I was shocked, it was awesome!
Being in remission from rheumatoid arthritis is almost like receiving a gift. I was briefly in remission 10 years ago, and even though it only lasted a few months, I always said it could happen again: I never gave up hope. Hope it lasts longer this time.
I am very aware that I still live with rheumatoid arthritis. It didn’t go away suddenly, it’s just that things are calm right now. I still feel tired and I still live with the pain. I have a joint deformity before starting the treatment that I am on, and it will never be fixed. But I haven’t had a very bad day since remission. I still have to be vigilant and keep taking my meds, and keep doing whatever I have done to stay healthy. Exercise Its very important; I walk half a mile to and from work most days of the week, even in winter! I also know when to rest, especially since I am more vulnerable to infections with the drugs.
Attitude is so important too. When you have rheumatoid arthritis, every day won’t be good. But I find that if you can bring humor, even when you’re in pain, it can at least take your mind off things for a little while. And never give up hope. I trust scientists and just look at the drugs that currently exist and those that are still in development. I have lived with the disease for a long time and I want people to know that I am proof that remission can happen, and that is great.
This interview has been edited and condensed for clarity.