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man tired from a long work day and longing to be with friends

Wait… How Old Are You?

When I tell people that I have RA, I get one of two responses: “Yeah, I have joint pain, too” or “Arthritis? At your age? No way…” The former is an increasingly frustrating response because it rests in some level of ignorance, as RA is more than joint pain; it’s a destructive disease that can damage your heart, lungs, kidneys, and more.

However, it is the second response that is more infuriating to me than anything else, although I understand why people respond in that manner. I am only 22 and (hopefully) look like it. Nevertheless, I’d like to take some time today to talk about how my age intricately affects my experience with RA.

Age at RA diagnosis: 21 years old

My diagnosis came when I was 21. October 2018 was a turbulent month in my life between finishing my bachelor’s degree, writing a thesis, and dealing with – at that time – unexplainable pain. Hearing the words of “You have rheumatoid arthritis” escape my rheumatologist’s mouth even before having anti-CCP and C-Reactive protein tests was alarming, and it has taken until now to fully unpack and understand what having RA means as a young person.

In denial about my diagnosis

For the first three months after the diagnosis, I tried to continue living my life as I normally would, trudging through my schoolwork, not really telling my professors about my problem, and hoping that this would just go away.

There were certainly layers of denial embedded in that mindsight of wishing RA would just go away; however, as the months have passed on like slow leaves falling to the ground, I realized that my RA was here to stay, that my daily and nightly experience, my whole entire life, would be colored by this disease. And I concomitantly recognized that my life had to change to accompany for this disease.

Adjusting to a different life

As someone who is just beginning their life, this is exceedingly difficult: by the end of the day, I have no energy to go out for drinks with my co-workers, to take on more tasks at work, to live a normal life. It makes me realize how different my life now is.

How I spend my time is different from my friends

When I hear my friends and coworkers talk about all the exciting and fun things they did over the weekend—such as kayaking, swimming, fishing, and hiking (remember that I do live in Florida)—I think about how most of my weekends are spent: recovering from the week, resting my joints, doing necessary household chores, and, if my energy allows, exploring some trails around Tallahassee.

It’s times like this when feelings of missing out on the vitality of my life creep in, which only culminates in the recognition that I have to let go of those parts of my life that I will no longer experience and embrace what I have, what is right in front of me.

Accepting the changes that RA will bring

I don’t want to. I don’t want to accept this disease; I don’t want to have this life; I only want to live a normal existence. But, now nine months after my diagnosis, I am only beginning to accept that my existence will never be normal.

Sometimes I feel like I have to sit down with myself throughout the day and remind myself that I do have this disease and that it profoundly affects my lived experience. That my story, that my life is very different now from those of my friends who are also young. That, above anything else, I have to listen and prioritize my body in order to live a fulfilling and enriching life. I think now I am looking to explicitly demarcate how my life will pan out with RA in it. And this is easier said than done.

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

  • Paula Jayne White
    2 months ago

    Thanks for telling your story, David. I was also diagnosed young. And decades later, I still get these same questions from others. (sigh) I know you will learn the tricks that will help you adapt, even if your normal isn’t everyone else’s normal. Still sucks, though. And it’s ok to admit that it sucks. I look forward to seeing more of your experiences in future articles. Hang in there!

  • Bets
    2 months ago

    Patricia, I am so sorry to hear about your experience with your aunt. That’s just pretty awful and ignorant! Thank you for sharing, I find it quite difficult to talk about RA with others because I dread the ignorance and when you already don’t feel well it’s hard to handle. Take care and wish you the best!

  • Patricia Darstein
    2 months ago

    I ALWAYS get the response from people…”Oh, I have arthritis too”. Like it something we all have and your no different. People do not realise that RA is different from Arthritis itself. My Aunt (who is a nurse or at least claims to be) even scuffs off to me…”oh yeah, I have RA in my thumb and I’m fine..it’s just there”. I don’t see what the big deal is…it’s there and I have no problems with RA. I am like “what”? I respond with “Oh, you just have RA in your thumb?” She says as she shows me and wiggles it “what’s the big deal?” As if I am some sort of idiot who is over dramatizing my illness, pain, many medications I’ve been battling for years. As if, I’m using it as an excuse to not attend family events, being so sick due to all the many side effects due to all medications? WTF? RA is an “all over” disease (in my opinion).
    It’s not just in one place. Am I right on this? I’m not a nurse but I don’t know…maybe I’m mistaken? RA was named perfectly (in my opinion). Confines you to (well basically) your room, your bed where ever you sleep. I am tired ALL the time. Even when I am not “flaring” I feel that fatigue…constant. It’s just ALWAYS there.

  • Richard Faust moderator
    2 months ago

    Hi David. It is completely understandable when diagnosed with a chronic condition like RA at a young age to to ponder on how your life will be different and, yes, to think about how your life is no longer “normal.” My wife, Kelly Mack, (who I’m sure you will get to know around here), was diagnosed at two and, so, has basically lived an RA life. I want so share this article she wrote several years ago about life with RA (because she can say it far better than I can summarize): https://rheumatoidarthritis.net/living/35-years-ra/?fbclid=IwAR1xfXnbI4f5wMmsKUR5bXyYIbSmKwMZ0GhCEPylvOCWAugWVb5EwBGLUlQ. The basic message is about living well – it may not be normal, but please know that it is certainly possible. Best, Richard (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips moderator
    2 months ago

    David,

    I know when I was 17 and DX’d with a chronic disease I felt that my life would never be ‘normal’. Now 45 years later I know my life was not normal. Thank God!!

    I am a better man, husband, father and human because I have three chronic diseases. Yes I worried and still worry about my life and future. I have made compromises, and gave up some hopes and dreams. But am I worse off since I have had three of these things? No, not at all.

    Life is a strange series of events. We live, we try, we succeed, we fail and we go on. I have had more than my fair share of success in this world. These damn things have not made my life easy.

    So all I can say after 45 years is thank God, an easy life is often not the best way to find happiness, but it can lead to a great life all the same.

    rick – moderator

  • David Advent moderator author
    2 months ago

    Hi @lawrphil,

    Thank you for your comments. I really appreciate them. Chronic diseases definitely shape our experience of the world around us and can positively impact our life– if we have the right mindset!

    Thank you, again,

    David (RheumatoidArthritis.net Team Member)

  • CynthiaV
    2 months ago

    David, your article is so poignant and personal. I was in my 40s when dx’d with RA/RD. After living with this disease for over 20 years I am familiar with much of what you share. It took me a long time to admit to myself the reality of my new life. Even now when experiencing a more healthful period in my life I say to myself, “maybe you don’t really have RA! Maybe you don’t really need to take so many meds?” But I truly know better. RA likes to remind me.

    What I don’t know is how emotionally, mentally and spiritually challenging being dx’d in your 20s must feel like. Forty is young but it’s not twenty. All I can say is that I believe you will sort it all out, unpack it as you say. Yes, this disease changes your life in large and small ways but once you begin to get to know how your body is affected, what works, what doesn’t I believe you will learn to thrive in your new normal.

    I won’t pretend it is an easy transition, it is not but it is doable. You’ll learn who your true friends are, the ones that stick and stay regardless of how many times you must cancel previous plans, bow out early or decline invitations. You’ll discover what you are capable of doing. How to thrive despite it all. It took me too long to accept the assistance of others, too long to use assistive devices like splints, braces, etc. Too long to know how to take care of myself.

    I realize you are a young man and that what I say might seem unsettling. I too am independent and too prideful but I learned sometimes that to live as fully as I desired it was important that I be grateful to those people who out of love and concern reach out to assist me and that there is no shame in wearing a splint or brace as long as it improves my ability to live comfortably and do the things I love.

    Being dx’d with RA today isn’t like being dx’d 30 or even 20 years ago. There is so much research and new methods and medications coming out all the time. I have great hope that someday soon RA will be totally eradicated! Until then we prosper in our own way.

    As you no doubt know it is important to gather a team of compassionate, skilled and caring doctors around you. Those committed lifelong to your care. Your rheumatologist being the, “captain” of the team. Without the trust and respect flowing patient to doctor and doctor to patient you will find it difficult to thrive. Be a strong advocate for yourself. If your doctor gets annoyed or hasn’t the time to discuss and explain treatment or new meds with you find a better doctor.

    Consider these things and I think you will once again enjoy some of what you long to. Consider also to visit this community often. Here you will find others who have walked in your shoes, people who care and understand. I believe your article will help countless others who like yourself have had their lives’ overturned by this and other chronic illness at a young age. I thank you for your honesty and will keep your needs in prayer.

  • David Advent moderator author
    2 months ago

    Hi @cynthiav,

    Thank you so much for your comments, I do appreciate them. Being diagnosed with RA has been such an alarming, jarring, and informative change in my life. But, you’re absolutely right in saying that mitigating the progression and symptoms of RA begins by being a strong advocate for yourself. This is a declamation that I am only beginning to utilize in my everyday life!

    Thank you for your comments, and I wish you the best,

    David (RheumatoidArthritis.net Team Member)

  • cac3711
    2 months ago

    Thank you so much for speaking up. I was 52 years old and diagnosed December 2018 so I understand and feel exactly how you feel. I receive the same reactions (including my age from people who think this is just arthritis) and it is frustrating. What I find interesting is that people will Google random information but will just come to a conclusion on what RA is without researching. People tell me you’ll get better and I stop and explain that my goal is to put this in remission & that there is no cure. I suggest that they will find out a lot more information on what I go through on a daily basis by researching what RA is. When I’m in the middle of a flareup people tend to look at me with pity or disappointment as if I failed them! Since June, after having my pity party, I am focusing on what makes me feel more like myself. I have switched to a plant-based diet, taking as much gluten out of my diet as I can and do you some activity, even if it’s only for two minutes, every day. I meditate and have removed unnecessary stress that could be removed from my life. I pray for each person on this journey and I thank all of you for your support. Again, well said David and thank you for sharing.

  • David Advent moderator author
    2 months ago

    Hi @cac3711,

    Thank you for your comments. You’re right, people do come into their own conclusions and can easily dismiss what RA actually is. I think with enough time and awareness, RA and its ramifications will be more widely known.

    Take care,

    David (RheumatoidArthritis.net Team Member)

  • Mary Sophia Hawks moderator
    2 months ago

    David,
    Thank you for speaking up. There are several young people on this site and I hope they will respond.
    I like your terminology-to unpack it all. After 6 years with this disease, I’m still unpacking. It takes time to come to terms. You are already showing excellent maturity in the adaptations you have made. Make sure you still get out and about at least once a week. Tell your friends that you can’t do the heavy activity stuff, but meeting for a meal or coffee would be helpful. Your true friends will understand.
    I have started calling this RD, rheumatoid disease, instead of RA. It stops the arthritis statements. RD is much more indicative of our illness. If people are interested, then I get to educate them.
    Keep checking in with us. You always have people here who understand.
    Blessings,
    Mary Sophia

  • David Advent moderator author
    2 months ago

    Hi Mary,

    Thank you for your kind words about my article, I really do appreciate them. RA does take time to unpack and understand… it’s always a process.

    Wishing you the best,

    David (RheumatoidArthritis.net Team Member)

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