“Too young to have RA” he said

I’m 24 years old and have a very aggressive form of RA. I have been fighting symptoms since I was 17 but was always dismissed as a “whiner”. Dismissed by doctors as a liar or “drug seeker”. I was to young to have RA they said, so I must be trying to get pain meds. In 2014 after I had my son, I fell one morning and couldn’t get up. I was 96 pounds and in so much pain that I couldn’t walk anymore. My significant other rushed me to the hospital in a DIFFERENT town. Where I was diagnosed in 2 days and started on meds shortly after. After years of suffering I now have permanently twisted hands, thinning hair and damaged nerves that could have been prevented by a good doctor. Even after being diagnosed I still get horrible looks on days when I limp or especially when I go to the pharmacy for my meds, have you ever seen the looks from people when a 24-year-old gets a bottle of hydrocodone?? I’ve gone through 3 pharmacies… I look healthy but feel dead on the inside some days, has the pain and judgment taken such a hard toll on any of you? Because, around here I am an oddity apparently, too pretty to be sick and too young to be chronically ill. I don’t fit people’s ideal mental image of sick…

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

View Comments (8)
  • 4jr3gn
    2 years ago

    Firstly, you are NOT alone! We, the RA community are always here for you.

    It took doctors in my city 15 years to diagnose me properly with RA. Until then, I went from Doctor to Doctor, Specialist to Specialist, with all of them saying, “you’re test results are normal” or “idiopathic”. Finally, I went to the Emergency Room one night with swollen hands and feet and was sent to a Rheumatologist who finally found something in my bloodwork.

    Secondly, those people who look at you funny when you limp, or hang your handicap sticker in your car window, can “kiss the fattest part of my ass”, because they’ve never walked in my uncomfortable shoes. Don’t give them a second thought!!

    Hope Doctors are managing your symptoms now with meds and other methods.

    We are here for you!

    Teresa xo

  • Eebtool
    2 years ago

    Much to often do we suffer in silence. (got to pick our battles)

    The looks you get are issues that THEY have.
    If they could ATTEMPT to walk in your shoes they would see you so much differently.
    As far as being ‘to sick and too young to be chronically ill’ tell anyone that says that to you to go spend a day at a St.Jude Children’s Hospital.

    And by the way, It is more than OK to let it out if you need to. So go and Yell, Scream, Cuss, Throw something, Take a baseball bat to the garbage can or do what ever it takes.
    I will be here cheering for you.

  • Kelly Dabel moderator
    2 years ago

    Thanks for chiming in Eebtool! Great words of encouragement and advice. Kelly, Rheumatoidarthritis.net Team member

  • 2 years ago

    Hello,
    I think that the loneliness of this disease can be one of it’s worst aspects. When you explain it to people, they often look at you like you are an alien. And…that is why I visit and participate in this site. Everyone here knows what it’s like to have these kinds of struggles and it reinforces, for me, the fact that I’m not alone and (probably) not crazy.

    I remember a point where I was limping badly and recall, several times, getting looks of, of all things, disgust from people, as if I was simply trying to attract attention. I also, and this one is weird because I’ve always been a pretty tough guy, essentially got made fun of by a 13 or 14 year old kid on a day when things were extra painful and I could barely keep my head up. I have experienced some really, really wierd things in relation to peoples understanding of disease and illness. Makes you wonder what our society has become. We attack (or alienate) people simply because they are different.

    On a more positive note, I have learned a lot from this illness and I think about things a little (lot) different now. I know now that this illness is just a part of my journey. I now feel like there were lessons that I needed to learn that could only be learned by way of me getting seriously ill. And, funny to say, but I’m thankful for the lessons I’ve learned so far and know that there are many, many more to come.

    Please know that there are ways of treating your illness that involve bringing your body to a better state of health, rather than potentially damaging your body with pharmaceutical drugs. Your treatment choices may look limited, but that is far from true.

    Wishing you the best! Here is my story. https://rheumatoidarthritis.net/stories/finding-hope-and-healing/

  • Kelly Dabel moderator
    2 years ago

    Thank you for sharing your perspective and your story DesertStormTrooper. You are not alone here. So glad that our community is a support for you and that you feel understood here. We appreciate you being part of our community. Kelly, Rheumatoidarthritis.net Team Member

  • Erin Rush moderator
    2 years ago

    I am so sorry you went through this, 23s9n73! Unfortunately, I know many of our members can relate to your story — whether it’s the long road to diagnosis, hearing “you’re too young to have RA!”. or the struggle to get adequate pain medication. Please know you are not alone here! I know many of our members can read your story and nod along, as if to say, “I know EXACTLY what you mean!”. You are not the only member to be diagnosed in her 20’s. One of our contributors, Mariah Leach, was diagnosed while she was still in college. She is also a young mother with two children — https://rheumatoidarthritis.net/community/experts/mariah-zebrowski-leach/. And with the crackdown on opioid prescriptions, it is definitely getting harder to get prescriptions for certain pain medications. I thought you might find this article by Mariah relatable — https://rheumatoidarthritis.net/living/understanding-the-cdc-opioid-prescription-guidelines/. Chronic pain and managing that pain are a very common topic in this community. We have literally dozens of articles about this subject! So, if nothing else, I hope that helps you feel less isolated. And as to the “too young” comment? That’s a common pet peeve around here! So many individuals with RA have been told this very thing. Here’s one of my favorite articles called “8 Things Not to Say to Someone with RA” — https://rheumatoidarthritis.net/living/8-things-not-to-say-to-someone-who-has-ra/. Believe me, the toll of managing a chronic condition AND trying to educate others about what RA is can really wear on a person! Please feel free to come here anytime you need to share or just vent. We also have an active Facebook community you can check out — https://www.facebook.com/RheumatoidArthritisDotNet/. Thank you for sharing and I hope you know we have a large community here that can truly grasp what you are going through. Welcome! Best, Erin, RheumatoidArthritis.net Team Member.

  • Jade8568
    2 years ago

    PS ( im 48!)

  • Jade8568
    2 years ago

    It’s the story of my life hun! Look at my pucture…sadly I’ve heard it all for the passed 28 yrs!! I didn’t need to take pain meds till right after my divorce, and shortly after I needed to have a fentanyl patch added to the norco. Try explaining the patch to a new boyfriend.. needless to say I’ve been divorced since 2008..& still single… & probably will stay single… & all I ever hear is how I’m too pretty to be single…or to be in any pain. It’ stopped being a compliment decades ago. No one will fully understand unless they are going thru it too

  • Poll