A Message from a Young Rheumatoid Arthritis Warrior

Wait, hope, pray, and…

young RA Warrior KB tennisHello, everyone. My name is Katie Beth Young and I have a few words for those with AND without a Rheumatoid Arthritis diagnosis.

You might have read my mom’s post called The Me Before Rheumatoid Arthritis. Next month, I’ll be 17 so I remember the stucco days. I remember the landscaping, the hundreds of perfectly frosted and decorated cookies for a baby shower, the Christmas decorations and delicacies, the spick and span house, etc. I was the little kid in the overalls in one of the pictures from that post. I know firsthand what Rheumatoid Arthritis can do to someone’s life.

My own life has changed also in so many ways. I must be strong for my mom as we wait for a cure. Even though sometimes I truly feel there’s nothing I can do, I try to find as many ways to help as possible.

Margaret Becker is my very favorite music artist. She has a song called “I Won’t Be Persuaded.” If you don’t mind, I’d like to quote the chorus: “I don’t understand where you are in all this. Still I wait and hope and pray, and I won’t be persuaded…” That’s what we do: We wait for a cure, we hope for a remission, and pray for strength.

Sometimes there’s nothing else to do. But, I think maybe in this situation there’s one more thing: Act. We can act.

Those who have Rheumatoid Arthritis need to bring awareness to the rest of the world. They are the only ones who can. They have to make the doctors listen. They need to let those who do care help them. They need to fight! I am not in the position to tell them what to do, but doesn’t it seem hard enough to have RA without all that, too?

However, I AM in the position to speak to everyone else. Action needs to be taken by those who love people with Rheumatoid Arthritis. More than one type of action. I know you didn’t ask for your loved one to become disabled and sick, but they didn’t ask to BE disabled and sick either. Here are a few examples of the things I do to try to help.

I go with my mom on her errands and especially to her doctor’s appointments. While being encouraging is important, I find comfort in actually helping physically. Whenever we are out, I offer to take my mom’s purse for her. If you have RA, you know how heavy even a lightweight purse can be to an affected shoulder, wrist, hand, etc. Some doors are so heavy that no one with Rheumatoid Arthritis would ever get in unless someone opened it for them! For goodness sakes, open the door for them.

At the grocery store, I pick up the juice bottles and cans. I let my mom point at what to get and I get some. No big deal—for me.

My sister and I help my mom make dinner every night and do it ourselves sometimes. Picking up pots and opening cans doesn’t cause us trouble. We try to keep the kitchen clean. I remember the time not too long ago when we never even washed the dishes—our mom did it all!

Just as important as the physical help is the support of a listening ear. Let your mom, dad, sister, friend tell you about the pain and fatigue. Let them be heard. They say we don’t understand, but why can’t we try? Most of their suffering is kept to themselves; after all, the pain is constant.

This is just a start to everything we can do to show the people we love that we care. No, it’s not even showing we care; it’s doing the only right thing. Think of it this way: what would you want if you were disabled, in pain, and hoping for a remission? You’d want someone to open the door, for goodness sake.

I hope I didn’t bore anyone, this being my first time and all. I suppose I’m not quite as witty as my mom! ;D Wait, Hope, Pray… and Act.

I recommend you also read The Me Before Rheumatoid Arthritis and A Memo to Non-RA patients.

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

19 thoughts on “A Message from a Young Rheumatoid Arthritis Warrior

  • July 16, 2009 at 9:15 pm
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    What a precious thing to do for your mom, Katie Beth! She is blessed to have a warrior like you. Thanks for sharing your heart. Oh, I have a daughter named Katie, too!

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  • July 16, 2009 at 10:07 pm
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    This is a really nice thing that your daughter did. Great job Katie Beth….it is a very difficult disease to understand, but it looks like you have some understanding for your mom on her bad days. She is glad you listen…trust me!

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  • July 17, 2009 at 2:29 pm
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    Oh my word! She is only 17? This was great! she voiced everything perfectly!!

    courtney

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  • July 17, 2009 at 2:45 pm
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    She is almost 17…
    Stay tuned for her replies, guys…

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  • July 17, 2009 at 3:25 pm
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    Katie, you are a very articulate writer. You are very wise for just 16 years old. That is so wonderful of you to be supportive of your Mom. I was just recently diagnosed, my kids are 5 years old and 4 months old, and my son (the five year old) is already making allowances for my RA (for example, he learned how to buckle his own carseat because it was so painful for me). You kids keep us going.

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  • July 17, 2009 at 5:45 pm
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    Shanna, I agree. Katie, you are an excellent writer. And, you are a most thoughtful and compassionate daughter. My children are 30 years old and 32 years old, and they have been such a support (physically and emotionally) through all of the changes I am going through. Please know that you are so appreciated!!

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  • July 17, 2009 at 5:46 pm
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    Katie,

    You such an incredible young woman. You have a very strong empathy and understanding for those of us that own RA. Your Mom is truly blessed to have you. You are an excellent advocate for RA families. I can only hope that my 8 year old daughter will some day see things as you do. Stay strong for you and your family. Remember to take time for you. Thank you so much for your blog and letting people with RA know that there are those that really care and do understand what we go through on a daily basis. If only the world had more like you.

    Jamie

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  • July 18, 2009 at 5:03 pm
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    Thank you all of you for your wonderful and encouraging comments! They were so sweet. About my age, my sister told me about a 17 year old who recently became the youngest person to circumnavigate the globe by boat alone! Maybe kids are more willing to listen because they know how much you want to be well. It’s helpful to have someone understand when every day is either hard or harder. I wish you all well in the fight.
    Katie Beth

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  • July 20, 2009 at 5:42 pm
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    Again I'm moved to tears. Kelly, you are truely blessed with this girl of yours! Angie

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  • January 24, 2010 at 10:43 am
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    My children are 30, 28, and 27. I get absolutely no help, unless I BEG or they need $$$ or the use of my truck, understanding is called “Stop crying and relax, you know it get’s worse when you’re upset!” then they promise to call back or come over later. I have yet to see later. Katie Beth you are a remarkable young woman! Kelly, you are truly a blessed Mom! In HIS Love, Alice :rose:

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    • January 25, 2010 at 10:27 am
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      Alice,
      I’m sorry. That’s terrible.

      And I do know I’m blessed. I did show your comment to Katie Beth. She smiled big.

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  • April 6, 2010 at 9:26 am
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    WOW! Your mom is sooo lucky to have such a wonderful daughter! I have a daughter your age and she is wonderful also and I can thank God that I have her to understand, although, I don’t really believe that anyone really understands what we feel like unless they have RA also. I guess the hardest for me is feeling so guilty that I can’t be the mom that I once was. I, too, never made my children do much and I really enjoyed being the mom that did it all. I can’t do that now and it is hard. Your mom is a brave and strong woman. I can see by her posts on facebook and here that she has been a great mom. Thank you for sharing your feelings and thoughts about how this disease has affected your lives from your point of view. We forget sometimes that there are people that love us and are cheering us on in this struggle! BIG HUGS to you!

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  • July 20, 2011 at 7:21 pm
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    Hi Katie,
    I LOVED your writing, and am touched by your devotion to your mom!!

    Sincerely,
    Susan Ziliak

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  • September 4, 2011 at 1:43 pm
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    Thank you very much for this beautiful message. So often, we RA’ers complain about people not understanding, and not helping; it’s a great relief to hear that someone who doesn’t have RA themselves really does care, and empathize with, someone who does. Thank you!

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    • September 4, 2011 at 1:51 pm
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      Thanks Samuel. I’m very proud of the writer – my daughter. I do believe that both of my daughters (now grown) and my best friend Leslie really do understand as much as someone can who doesn’t have RA – because they saw it all happen to me with their own eyes – there is not ANY “well, it’s not so bad; maybe you are exaggerating…”

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  • September 5, 2011 at 7:45 am
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    This made me cry in the best way possible.
    It’s so nice to know that there are people out there who genuinely care and want to help, even though they don’t have a chronic illness themselves.

    I have a few strong fighters on my team, and this reminds me of a few of the things they’ve said – in particular, the idea that I already have to fight just to complete everyday tasks, so it seems unfair that I should have to fight to make myself heard or understood as well.

    I’m only a few years older than Katie, but I really hope that I have as much compassion, empathy and fight in me as she does.
    No doubt it will be helpful on my road to acceptance.

    Thank you for the kind words and, most of all, the hope that people can understand without living with RA.

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  • November 23, 2015 at 4:55 pm
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    Beautifully written Katie Beth! This so touched my heart remembering all the things I once enjoyed, landscaping, building fences and all. The toll it has taken financially is astronomical, and taking away the thing I so enjoyed was being able to work too.I am so glad to know your mother has wonderful support from children who have great love and an understanding of her needs. It is difficu;t for some to understand the needs the RD causes, even my daughter and husband have had to learn a different me. Of course my daughter is grown, but there are some aspects she still hasn’t grasped, and her home is only feet away. My husband is older than your dad, and we have been married for a good many years. He is my 3rd husband, but the best ever with real understanding, compassion and kindness. I cannot express the grattitude I have for finding him and all the care he has shown helping me with household and all other chores I used to do, plus work the many hours he does.You don’t have to worry or be concerned with anything written. Just be you and that is so important. God Bless and once again, thank you!

    Reply

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