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21 with RA

I was diagnosed with severe RA on January 1, 2016. I think I was in a state of denial at first because I never got upset or acted like anything had happened, I just had a million thoughts taking over my mind that I didn’t know how to say out loud. I let my parents know what the doctor had said and all they could ask was how I felt about it, and honestly I had no answer.

I have shared my story with my really close friends and of course my family but no one else so this is a little weird to me to be posting my story but I need more people to relate to and who have had the same experiences as me.
This all started in October 2015 when my right knee randomly swelled up and I didn’t know why. I saw a doctor who told me I had a torn meniscus and ordered an MRI to get a better look. So after three weeks of being in a brace and waiting for results…it turned out that nothing was wrong just a lot of inflammation. The dr. gave me anti-inflammatories that I was on for over a month and a half. They worked a little. Next thing I knew I was having elbow, jaw, toe, knee, and ankle pain, the pain was on both sides. This went on for about a month and got worse and worse everyday. It’s now December 2015 and I got out of school for over a month, that entire month I spent at home I couldn’t do anything for myself. My mom or little sister had to help me take showers, put on all my clothes, use the bathroom because I wasn’t able to sit on my own, and even sometimes eat because of my elbow pain. I was not the type of person to ask help for anything or ask anyone to do anything for me I am very independent but this all changed so fast. I was miserable. I was so embarrassed to tell anyone what was going on and to even go in public that for a whole month I didn’t leave my house or talk to anyone but my family. I had myself convinced that I was never going to get better and if this is how the rest of my life would be then I don’t even want to live anymore. I finally saw a rheumatologist at the end of December who diagnosed me and put me on prednisone and methotrexate. I have been on this medication since then and I have seen major improvements with my mobility. Everyone around me has been very supportive of this so that helps me out a lot knowing I have people standing by me. I never show how I feel on the outside and rarely share my feelings but I am sad. I am not able to do many of the things I used to do before RA. I played four sports in high school and continued on in college playing random soccer or volleyball games, I cant do any of that now. I had a complete lifestyle change, I am 21 years old and it’s my senior year of college so I wanted to have all the fun I could have while I was still here. I have missed out on so many things over the past few months that if I start to think about it too much then I just want to run away from everything and everyone. I never would have dreamed that this would happen to me, I had a perfect life. Some days are better than others and I keep myself busy with school to keep my mind off of it. Sometimes it just gets difficult because the pain never goes away it’s always there and always will be. I know I don’t have it nearly as bad as most people do and I should be thankful that I am doing better, I just wanted to share my experience with people like me and I thank y’all for letting me do so!

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

  • Nicole
    3 years ago

    Alex, I am so glad that you shared your story. I am 22 and have had RA since I was 3 years old. It really is difficult to be in college and have RA. I am currently in first years of graduate school now, and I still have to deal with missing out on all the fun because of my symptoms. It can be embarrassing sometimes and very difficult when your friends or classmates do not understand. Hang in there it will get better!

  • Dave
    3 years ago

    So sorry that you are going through this ordeal, Alex. RA is a beast that attacks people of all ages. I was diagnosed last May at 64 years old. I have been an athletic person all my life and was disappointed when it hit me, because it DOES change your lifestyle in ways that can be hard to live with. I won’t go into a long rant about it, I’ll just say this: Don’t let it rule your life. Make the adjustments that are necessary to live with it and never stop fighting. Learn to listen to your body, every day is different and you never know what your body is gonna require on any given day. Live every day to it’s fullest within the new limits that RA is placing on you and never stop enjoying the life that is given you. Dave

  • Jillian S moderator
    3 years ago

    Alex,
    Thank you so much for having the courage to share your story with us. On Rheumatoidarthritis.net, you will find thousands of people who share your diagnoses and experiences. An RA diagnosis at such a young age is understandably very difficult to cope with. But please know that you are not alone! Our community is filled with people of all ages and each person’s unique story helps us collectively come up with ways to manage the pain and live life to the fullest. While chronic disease will definitely change the way you approach life, it does not have to suck out the joy.
    I thought you might relate to this article that addresses some of the stereotypes associated with RA: https://rheumatoidarthritis.net/news/awareness-gaps/

    We are glad to hear that you finally got the correct diagnoses- this is the first step to treating your symptoms. As you mentioned, once prescribed prednisone and methotrexate, your pain began to lessen. Being on the right medication for you is so important and it seems like you and your rheumatologist have figured it out pretty quickly. Though the medication has helped, I know that it is still frustrating that you can’t embrace your athleticism in the way you may have before your diagnoses. But don’t give up on the things you enjoy! Perhaps you can still play soccer or volleyball in a less intense manner if approved by your doctor. Continuing to exercise and stay active is an important component of managing RA. Incorporating a regular exercise program into your routine can immensely help reduce the severity of symptoms such as fatigue, stiffness, pain and weakness. For more info feel free to read more here: https://rheumatoidarthritis.net/exercise/

    It sounds like you have come a long way since your diagnosis. Feelings of depression and hopelessness every now and then are normal. However, if these feelings become more common, many community members find it helpful to discuss their thoughts aloud. If you haven’t already, you may want to check out the Arthritis Foundation which has additional information on RA and can help you find a support group if you are interested. http://www.arthritis.org/New-York/-Files/Documents/Arthritis-Support-Groups-Fall-14–Updated.pdf

    Please know that you can always reach out to us at anytime about anything!
    You can also find us on facebook!

    Warm Regards,
    Jillian (Rheumatoidarthritis.net Team)

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