Skip to Accessibility Tools Skip to Content Skip to Footer

My RA Reality

It all started when I was 10 and woke up in the middle of the night screaming with pain. My mom took me to the emergency room where they found a lump on my right knee. The doctors told my parents that it was just “growing pains”. The pain continued and I remember not being able to play softball and having to sit out. People thought I was faking it.
My parents eventually took me to an orthopedic surgeon to plan on removing the lump on my knee, which turned out to be a benign tumor. After the surgery the same doctor asked me to make a fist with my hands and discovered I couldn’t. He referred me to Mayo Clinic where I was diagnosed with Juvenile Rheumatoid Arthritis.

I’m 30 now and my JRA has progressed. I had a total hip replacement this last April and now I’m trying to make the decision to have my ankles replaced. I’m currently taking Actemra injections once per week and it helps with the all over body aches and pains, but there is still a lot of joint damage and inflammation that I can’t seem to get control of.

My ankles swell and get stuck if I’m on them for more than an hour, and the pain puts me in tears and is unbearable. It’s frustrating and I feel like doctors either don’t know how to help or think that I’m a hopeless case. It gets lonely and I feel sad a lot.

It’s been such a long journey of pain and being misunderstood by friends and family, but I hope to share some of my experiences with RA so that I can help someone who understands.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Mariah Z. Leach moderator
    5 years ago

    Hi Mallorie ~ Thank you so much for taking the time to share your story. It sounds like you have been through a lot, especially for being so young. It must have been frustrating for you growing up when people thought you were faking it. I understand what you mean about sometimes feeling lonely and sad – because it is really hard when your friends and family don’t understand what you are going through. I am really glad that you have found our community because we understand and we are here to support you! And you are brave to share your story because I think you are right, it may help someone else in a similar situation. Hang in there!

  • Mallorie author
    5 years ago

    Thank you for the comment Mariah. I have a lot to share and hope to find the words to express life with RA. RA continues to be frustrating, but I try to stay positive. I have a lot of people who support me, but at the same time a lot of people who still don’t understand because I ignore and and try to hide my RA. It’s my way of fighting the disease and at the same time try to feel normal.
    Thank you again for your kind words as they are reaffirming!

  • Poll