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Rheumatoid Arthritis Remission: This is what it really feels like



Having worked in the medical field for over 30 years has helped me set the dates for my rheumatoid arthritis in the healthcare sector. I’m not afraid to ask if I need a test, and when I think something needs to be looked at, I’m not shy: I ask. The patient has the right to do so, and I have a very good relationship with my healthcare team.

After years of trying various medications 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 there. For me it was a life changer. I think that’s why I can still work full time, which in turn keeps me going.

What also helped was finding a community that understood what I was going through. In 1

991, the only way I could see how people deal with rheumatoid arthritis was by looking at VHS tapes from the library. I didn’t know anyone with arthritis when I was diagnosed or anyone else under 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 it felt like nobody understood. When I tried to talk to someone about the pain and obstacles I was facing, I was accused of being negative. I had to find people who were uplifting.

In 2002 I discovered CreakyJoints, a community for people with arthritis. It was very helpful to meet other people online in the chat room and later on the Facebook page and I started reading the monthly newsletter. Although I’m obviously a shy person, I wanted to get involved more. I worked on 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 patient council. We meet monthly and work on brochures to help raise awareness, especially about the mental health of living with arthritis. I really want people to know that it’s okay to find someone to talk to when you have trouble dealing with it. You don’t have to do this alone. There are people out there just like you. And when you ask for help, you’re not only helping yourself but others too.

As severe as rheumatoid arthritis can be, I always had hope. In 2020 I noticed 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 an exam in August I found I was in remission. I thought I was in remission? I was shocked – it was great!

Being in remission from rheumatoid arthritis is almost like receiving a gift. I was in brief remission 10 years ago and although it only lasted a few months, I kept saying it could happen again: I never gave up hope. I hope it will take longer this time.

I am very aware that I am still living with rheumatoid arthritis. It didn’t suddenly go away, it’s just that things are quiet right now. I am still tired and still living in pain. I have a joint deformity before I started the treatment I’m taking and it will never fix it. But I haven’t had very bad days since going into remission. I still need to be vigilant and continue to take my medication and do all the things that I have done to stay healthy. Exercise is very important; I walk half a mile to and from work most days of the week, including winter! I also know when to rest, especially since I’m more prone to getting infections with the medication.

Attitude is so important too. If you have rheumatoid arthritis, not every day is going to be great. But I find if you can bring humor with you, even when you are in pain, it can at least take your mind off it for a while. And never give up hope. I trust scientists and only look at the drugs that are currently available and that are still being developed. I’ve lived with the disease for a long time and I want people to know that I am proof that remission can happen – and it’s great.

This interview has been edited and condensed for the sake of clarity.

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