Interview with a young woman living with Rheumatoid Arthritis, Part 2 | Rheumatoid Arthritis Warrior

Interview with a young woman living with Rheumatoid Arthritis, Part 2

 

Living with Rheumatoid Arthritis as a teen

PamelaWhat is it like to have RA as a teenager?

“Having RA and being a teenager is hard. It’s like ‘only older people get this’ and I have it! LOL. But I’m still the Crazy, God-loving, fun Girl even if I do I have this. It’s hard sometimes because people judge you. Like you have to go to college and you have to get a job and you have to do this and that. And I’m like ‘Hello! I have RA, I’m not Super Kid.’

 And RA makes you tired and in pain all the time. Sometimes it’s hard because I want to do so much yet I can’t. This disease may never go away for me.”

I asked Pamela whether she talks to her friends about Rheumatoid Arthritis.

“Not too many people know about it, because they don’t understand. Everybody thinks it’s for old people only. And I have to tell them, but I don’t mind because I want them to know. Sometimes they don’t seem to care till they see how you are when you are in pain. And most of the time they care and want to know more about it. “

Did you know anything about Rheumatoid Arthritis before you were diagnosed?

“Well, no. Just my aunt and I didn’t know that much, But that’s the only time I have heard about it. Well, all I knew (was) it had something to do with your bones… my aunt on my Father’s side got it when she 25. She has it really bad.”

What the world needs to know about Rheumatoid Arthritis

What would you like to tell people about living with Rheumatoid Arthritis?

RA is one of things in my life I wish I didn’t have! …Don’t judge people with RA – everyone is going though stuff. And always help them when they ask for help and be patient and CARE!”

What is the best way someone can help you with your RA?

“Just telling me, ‘You will get better’ and just caring. Even understanding a little bit helps.”

The impact of Rheumatoid Arthritis on a young life

How do you think RA has affected your family?

“Well, they have had to do a lot of stuff I can’t do anymore. My Mom is always there for me; she takes me to my appointments and stuff.  My Dad understands what I am going through.  And my brothers make dinner when I can’t or do a lot of stuff for me and they don’t mind. We had season passes to SeaWorld and we had to give it up because I can’t walk far. Our family likes to go to festivals and we don’t anymore. Or I stay home with my mom. It’s stressful with all my medical bills piling up. I feel like I am a burden even though my parents tell me no, I am not. “

Have any of future plans been influenced by RA?

“Oh yes it has! …(I wanted) to be a Chef, but now I’m looking at other things – something that’s not that much toll on my body…Chefs stand up so long and I can’t handle that and college. Well, I’m going soon or when I feel better. I’m so tired of people judging me if you don’t or if I put it off. I feel like when taking time off, I have to have a reason other than ‘I don’t feel good’ or ‘I can’t move today’!! I know some people can be chefs, but for me it’s always my back. Even when I cook for my family, it hurts or is too hard.”

Very wise advice about Rheumatoid Arthritis and life

What have you learned from living with Rheumatoid Arthritis?

“I have learned to have faith in God and my family because you never know how you will feel from one day to the next. And don’t be afraid to ask people for help. That is one thing I don’t like to do. But some days I have to. And always take care of yourself.”

Final observation: A cure for Rheumatoid Arthritis apathy

It is very clear that the impact of Rheumatoid Arthritis on a young life is tremendous. Physically, Pamela has been held back from many things. However, spiritually, she has strength beyond her years. I love the way she balances realism and hopefulness. If everyone listened to her words, the world would be a better place.

Did you miss Part 1 of the interview with Pamela?

Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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8 thoughts on “Interview with a young woman living with Rheumatoid Arthritis, Part 2

  • December 2, 2009 at 7:30 am
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    excellent Pamela! keep the positive attitude going

    Reply
  • December 2, 2009 at 8:47 am
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    I wanted to thank you and Pamela for this interview. I got my own RA diagnosis a couple of years ago at age 30 and *I* was too young for it. Pamela’s courage and spirit have really given me heart. And her wisdom is way beyond her years.

    Pamela, I want to tell you that you should not give up on your dreams — you just need to find creative ways of following through with them and know when it’s time to rest. Even with RA, I have continued to crochet and design dolls and toys. It takes me longer to finish a project because I need to rest my hands, but by making smaller items (dolls instead of afghans), I can still get the joy of finishing a project.

    Good luck to you and all the best!
    Karla

    Reply
  • December 2, 2009 at 8:57 am
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    Pamela is at truly amazing girl! She absolutely teared me up. I had already lived most of my life, college, marriage, children when I received my diagnosis. She is truly an amazing soul. Pamela – do not give up and don’t let RA stop you. :hugleft: :hugright:

    Reply
  • December 2, 2009 at 12:41 pm
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    THis young woman has wisdom beyond her years….. She is so Brave and God will see her through this…. I am touched by this Kelly…. Thanks for the one thousanth time:)

    Reply
  • December 2, 2009 at 6:19 pm
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    Pamela and Kelly, you are both brave RA warriors that inspire all of us.

    Reply
  • December 6, 2009 at 4:08 am
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    Pamela, thank you so very much for having the courage to speak out about your RA, share your story and even start your own blog. Over time you will learn more and more about your RA and how to listen to your body and predict the day. When that happens you feel a bit more in control and relaxed but still, RA is a roller coaster of life! Best of luck!!

    Reply
  • December 7, 2009 at 12:17 am
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    well, hats off to her…….i m also having ra since i was 7…and now i m 17.
    so i can understand what it feels like.

    Reply
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