Diagnosed with RA at 22

Hello everyone,

I take solace in all the encouraging words I’ve read on here. To tell you a little about myself: My name is Laura and I’m 22 years old. I recently graduated from the University of Massachusetts Amherst with a Bachelor’s of Science in Communication Disorders. Currently, I’m pursuing my Master’s degree in speech-language pathology at New York Medical College. I’m truly grateful beyond words to be at the school of my dreams, pursuing the career of my dreams. I was 21 when I began showing signs and symptoms of rheumatoid arthritis. RA was the furthest thing from my mind. I didn’t understand what was happening to my body.
After graduation, I spent the summer in Europe with my best friend as a post-graduation trip. The pain became unbearable and I spent most of my trip in tears. I found that it was becoming increasingly difficult for me to complete simple tasks, more specifically: opening bottles, walking up and down stairs, etc. I contacted my doctor back in Boston and she told me to acquire Prednisone at a pharmacy in Europe. It took care of the pain, thankfully, though there are obviously many ramifications to taking Prednisone. Upon my return, I was prescribed Methotrexate. I’m currently on 20 mg (8 tablets). The pain isn’t gone, but it’s manageable. The program I’m in at school is INSANELY rigorous, and I know that RA is exacerbated by stress, so I’ve been trying to learn how to cope with that. I’ve recently started losing my hair, which has been insanely devastating for me. This makes no sense to me. I recognize that it’s completely irrational, but this feels like some sort of punishment. I’m 22. The thought of living with this for the rest of my life – quite frankly – seems cruel and unimaginable. I haven’t even gotten to a place where I can talk about this openly without crying. I don’t say this for sympathy. I say this because I’m starting to feel as though people only understand arthritis to be a disease of the geriatric population. Have you found this, too? My hope is that by talking and engaging with others who are experiencing the same pain as me, I will be able to experience some emotional healing that I’ve been needing so desperately. Please share with me your thoughts, experiences, and advice. I’m angry with the cards I’ve been dealt, but I’m so grateful that we all get to walk this journey together. -Laura

 

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Comments

View Comments (14)
  • hansentania
    7 months ago

    Hi Laura:

    I’m 56 now and was diagnosed two years ago. Looking back I think I may have had
    RA much longer, but as you, I’m sure, realize, the road to diagnosis isn’t very straight. In my late 20’s and early 30’s I would have foot pain that was unreal. My husband would tell my I’m always in pain and not feeling good. I thought he was exaggerating. I attributed it to long hours on my feet doing my nursing job on hard concrete, and very minimally carpeted floors or, on the shoes I wore. Can’t begin to tell you how many shoes Ive gone through the years trying to find the comfortable work shoes of my dreams.

    In some ways I wish I had been diagnosed earlier so I could have been treated and wouldn’t have accumulated all of the joint damage. Still it’s no fun dealing with chronic pain no matter how old you are and 25 years ago, they didn’t have the treatments we have now. Arthritis seems like a chicken and egg thing in many respects.

    Do seek treatment for depression though, if it lasts longer than a few weeks. Everything is tied up in RA and needs to be treated quite often separately. Losing your hair might be an opportunity to play with some new hairstyles. I started to loose my hair volume after I had my third child. Not very fun, but I now wear it shorter and with less effort towards hairstyling because I can’t blow out my hair for all of the manipulation of brushes and blowdryer. Treat yourself to more dates at your hairstylist if you have trouble managing hairstyles because of the pain. They always make you feel better.

    Finding this website and getting the emails is really been something great. Every time I read an article like yours, I have the opportunity to go “Uh huh, that’s what happens to me too”, and somehow that helps my load to be less. What a great community we have here!

    Hang in there and know you aren’t the only one your age. As diagnosis gets better, hopefully we can spare many people like you from the joint damage.

  • sarab92
    7 months ago

    Hey Laura – Not sure why your post just popped up in my email today but I’m glad it did. I live in California and I just turned 26 years old. Right before my birthday in March, I was diagnosed with RA. I started experiencing my symptoms toward the end of 2017 and they quickly became unbearable. In January of 2018 I found out that I had stage 0 non-invasive cervical cancer (which was no doubt made worse by what I refer to as my “special” immune system). The fear and anxiety of having surgery for cancer at 25 years old completely exasperated my RA. I became very sad and could barely find the energy and courage to put a smile on my face. In the midst of recovering from my surgery and being diagnosed with RA, my boyfriend of a year and a half also broke up with me. Now like you say I’m not saying this for sympathy, but to give you some courage that even though this is all complete BULLSHIT AND SUCKS, it will get better. I’ve found that being on my own and focusing on the things I love has really helped me accept this disease. In some ways, it has opened up new doors for me that I didn’t consider before. I’ve learned to prioritize myself (although I’m still learning exactly how to “prioritize myself” without feeling completely selfish at times).
    I opted out of methotrexate and decided instead to try hydroxychloroquine. I’ve been on the medication with a very specific supplement routine to compliment it. I take Advil (or a shot of tequila) when I need it as well. This is all horrible and it takes time to move past this roller coaster, but I promise you are not alone. Keep doing what you love and try to keep that stress level down. In the end, this disease does not define you. Its a minor stop on this whole road of life. I hope you are doing well and feel a little better than you did back in December. xx

  • laurak author
    7 months ago

    Hi Sara,
    Thank you for your beautiful note of love. I am deeply sorry to hear about your struggles. I am not a super spiritual person, but the fact that my post just happened to pop up yesterday is inexplicable. I just left graduate school, YESTERDAY, to come home to Boston. My flare-ups have been unbearable and I needed to come home for a bit. I’ve been insanely emotional and devastated about it; I just want to finish school and my body won’t let me! So, the fact that you’re replying now is both coincidentally strange and wonderful. It is definitely a life changing event, and I’ve really made tremendous strides with the whole “why me?” thing. I mean, why NOT me? This crap has got to happen to someone, and what makes me different than anyone else? So, I’ve made lots of progress in that department. I appreciate all of your kind words and advice, and I love what you said about prioritizing, and that resonates with me deeply. As much as I would love to finish my degree right now, I need to get my health under control. That’s #1! Thank you again for your insight and advice, and I hope that you, too, are feeling much better. Best, Laura

  • Gail
    1 year ago

    Hi Laura. I can definitely relate to your story. I was diagnosed at age 28, 6 months after the birth of my son. I also had a 2 year old girl. I am now 61 years old. I felt the same way after being diagnosed. I was angry, frustrated. I would ask God “Why me”. What did I do that was so horrible that I have this disease. I decided that I couldn’t live my life with this kind of pain. But here I am today still fighting the battle. RA is not fair, but there are a lot of people out there fighting worse things. I’m grateful for my kids who give me all the support in the world. It is very helpful though to be able to discuss RA with people who really understand what you’re going though. People who don’t have RA really can’t comprehend the pain and how it changes your life. Keep fighting the battle Laura. You will have good days and, sorry to say, you will have bad days.

  • 403lvq
    1 year ago

    I also have R.A. and hair loss. It has increased a lot since I have been on Orencia. My doctor suggested folic acid for mouth sores but did not suggest how much. I take 800 mcg but it has not slowed the hair loss. Dry shampoo is a good thickener and the keratin fibers that you can sprinkle on was a big help to me for many years. I used “Hair so Real”.
    At this point, I am seriously having to think about a wig but I am 75 years old.
    My heart goes out to you. Most people do not understand how devastating this is to a woman.

  • kristennotwiig
    1 year ago

    Hi Laura! Your story deeply resonates with me. I was a bit older, 26 when I was diagnosed and I have especially found it challenging to find people close to my age. There is a lot to mourn with all of these life changes, and it’s okay to feel all of it. Thanks to sites like this, I have slowly been able to connect with others that share some aspects of our experience. Particularly, https://theyoungfaceofarthritis.com/ and Steph is an awesome find, as well as Angela who relates to RA with both humor and grace: https://www.facebook.com/inflamedRA/?ref=br_rs. Us young’uns are out here, you might just have to hunt a little harder to find us! Feel free to connect with me as well via email or facebook. Sometimes just being able to talk freely about your experience to someone who “gets it” can make all the difference in feeling connected and not isolated. 🙂

  • laurak author
    7 months ago

    Thank you, Kristen. And apologies for seeing this just now. Yes, I would love to connect! And I so appreciate your beautiful words of love. Xo, Laura

  • Larry Sawyer
    1 year ago

    I have had RA forever, had a successful career as a director in a Fortune 250, retired and taught alpine skiing at Copper Mountain for 15 years. Have had multiple
    surgery’s. Always have the attitude that RA is a distraction. no matter what is going on, I could get through this so that I could go on with my life. was fortunate to marry a women who has stayed with me 48 years and my RA for 39 years. We have had 3 successful children. and six successful grand kids. So learn as much about it as you can, to beat it, you have to know it., keep track of what medications are out there, Tell your RA doc what is happening.pa attention this web sight, their is a lot of good stuff that happens here. Read. and well in mind and body.
    Larry
    age75

  • Carla Kienast
    1 year ago

    Hi Laura: I just want you to know that you’ve come to the right place! There is so much support and information here. You never have to feel like you’re alone with your disease and you can find the information you need to cope with the situation and make the best decisions possible. When I was diagnosed almost 10 years ago (at a much older age) there wasn’t as much information — especially direct patient information — available. As Erin points out, there are people who have faced what you’re facing and have a lot of wisdom to share. There’s no question that RA can make life more challenging but, trust me, we’ve got your back.

  • amybeth
    1 year ago

    Hi Laura,
    When I was taking Methotrexate my doctor told me about hair loss and prescribed folic acid. Have you asked about that?

  • Richard Faust moderator
    1 year ago

    Hi Laura. On top of the excellent information from Erin, I thought you might be interested in this article from our editorial team on methotrexate: https://rheumatoidarthritis.net/treatment/methotrexate/. Hair loss is one of the potential side-effects of methotrexate. Your doctor should be able to provide you with additional information and potential ways to deal with it.

    In addition, one of our contributors did a ten part series on things she would tell her newly diagnosed self (I recommend the whole series). The first article is on getting and dealing with the diagnosis: https://rheumatoidarthritis.net/living/no-1-its-just-a-diagnosis/.

    Know that you are not alone and welcome here anytime you need information and support. Best, Richard (RheumatoidArthritis.net Team)

  • Erin Rush moderator
    1 year ago

    Thank you for sharing a part of your story with the RheumatoidArthritis.net community! You have put into words what many of our members have expressed — fatigue, sadness, frustration, anger, and a lack of understanding among the general population, to name just a few. You are not alone! We have many young members or members that were diagnosed at a young age that have found a lot of misinformation about what RA is and how it affects the body. It’s not your grandma’s arthritis, as we say here. One of our contributors, Mariah Zeach, was diagnosed at age 25 while pursuing an advanced degree. She has written extensively about being a young woman (and now a mother) living and working with RA. You might relate to this piece she wrote about what NOT to say to someone with RA. It touches on a few things you mentioned in your post — https://rheumatoidarthritis.net/living/8-things-not-to-say-to-someone-who-has-ra/. And you are right; stress can make RA symptoms worse. But, how does one avoid stress in this life? This is also a popular topic of discussion within our community. What many of our members boil it down to is this — you have to make yourself and your health a priority. Another writer that was diagnosed at a young age wrote about making yourself a priority here — https://rheumatoidarthritis.net/living/priority-number-one/. And being angry? Well, that’s a pretty normal and reasonable response to having your whole life upended and your plans for the future put into question. I would go so far as to say that it’s healthy to go through a wide range of emotions when trying to navigate those early years of managing a chronic condition. No one can have a Pollyanna attitude 24/7. When the anger comes, you might find this helpful — https://rheumatoidarthritis.net/living/anger-comes/comment-page-1/#comments.

    I hope you are able to find the balance to continue your education. Please know you are not alone here! I know your words will resonate with so many community members.

    Thank you again for taking the time to share and please don’t hesitate to share or ask questions anytime.

    Best, Erin, RheumatoidArthritis.net Team Member

  • Richardgross
    1 year ago

    Hi my name is Rich I was diagnosed with RA in 2000 I was 33 it changed my life, I loved working out and feeling and looking strong but that all ended quickly. Fast forward to 2017 I’m on multiple anti-inflammatory drugs and pain killers I’ve tried multiple biologic which all failed. No its even tougher to get pain meds. I have to directly to Sherman hospital give a pea sample and than get my monthly Tramadol prescription. Yes having RA sux but I guess it could always be worse .

  • Ed Burgoyne moderator
    1 year ago

    Richardgross, so sorrry to hear that RA has taken away the lifestyle yo so much enjoyed. While you are having troubles getting through the days finding relief, I do so hope that you are able to find some good in each day and it makes things better for you if just for a short time. Ed B. (RheumatoidArthritis.net) Team Member

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