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The Loneliness of Being a JRA Kid

All these years later even in middle age I think of myself as a JRA kid. Now juvenile rheumatoid arthritis has been renamed juvenile idiopathic arthritis, but I still identify with the JRA. It’s in my bones. And I can recognize others (although rare) in an instant. I like to think of us as unicorns—we’re unique, beautiful, and strong.

A rare and isolating condition for most

When I was a child, I didn’t know anyone else with JRA. We lived in the country and I had a rare disease. The closest Arthritis Foundation chapter was about an hour away and not many folks there even had rheumatoid arthritis. It was sort of like “so close, but still so far” that it wasn’t really helpful.

As I continue to date myself, it was also pre-internet. I didn’t have chat boards or websites, or even emails for connecting with other kids in my situation. It felt isolating.

I had plenty of friends and fun. I enjoyed learning. But a lot of times I felt like adults—particularly the medical professionals in my life (nurses, doctors, physical and occupational therapists, even phlebotomists)—understood me the best. These people knew I had a serious disease, that my condition was advancing aggressively, that my symptoms were debilitating. They spoke to me like equals about how I felt, my medications, my worries and questions. They didn’t have a lot of answers, but they understood.

Being mature beyond my years

Being a JRA kid meant a certain amount of being mature beyond my years. It meant understanding my rheumatoid arthritis, knowing my medications, doing my exercises, and living with serious chronic pain as a child. Yet I was still a kid. It was sort of a split-brain thing where I had to be an adult because of my condition, yet I was still immature. Let’s just say I wasn’t always perfect at doing what I should for my health.

For me, this maturity also meant that I didn’t always feel connected to other kids my age. I felt a distance in attitude. And with my physical disabilities even as a child, I couldn’t play the same way. I retreated to books and my imagination.

Despite being sick, I remember having a very happy childhood. But it was also disrupted with serious illness—flares that took away my ability to walk, pain that kept me up at night, procedures that didn’t always help, and infinite hours of tests and doctors’ appointments.

As much as I love my family and childhood friends, I also remember being a JRA kid as a lonely time. No one my age understood what it was like to be fighting rheumatoid arthritis. And no adult could understand what it was like to be a kid with a serious, life-altering chronic disease. It was a gap that could not be filled.

In the new era of the global Web and social media, I really hope this is not the case anymore for children with rheumatoid arthritis. I feel like these technologies can help to minimize the isolation of these children, just as new drug developments can hopefully minimize the effects of the disease.

I feel so glad and fulfilled to have the RheumatoidArthritis.net community—a place where I have connected and made new friends, including adults who had JRA. The loneliness I felt as a child has been alleviated by the shared experience and support of this community. It’s my deepest wish that no one with this disease shall ever have to feel alone in their journey again. While I can’t change the past, I am glad to be a part of this wonderful community now.

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

  • Ana Lopes
    9 months ago

    Hi Kelly,
    Like you, I am also a JRA kid. Now I am 29 years old but I suffer from JRA since I was 3. I am writing this to tell you that I agree with you 100%. For me your text explains perfectly what it’s like to be a child with a chronic debilitating disease.
    Like you I also feel that this is an isolating condition. As I was growing up, I noticed that very few people knew what this disease was. I was mocked by kids in the school because I was not able to play the same games that they used to. I was bullied almost all my school years. Even the adults didn´t understand me. Some of then thought that I was making up because “RA is not a disease of kids”. Others, incluiding teachers told me and my parents I was being lazy or that I was inventing pains.
    On the other hand, and as you mention in your text, I aslo feel that JRA made mature beyond my years. I was just a kid when I started taking lots of different medication and I was just a kid when I started to control my own medication (without no one’s help). As a child, I kwen the functions of all the pills that I took and in which dose I had to take them. I had to deal with horrible pains and disability and even my parents couldn’t do much to help (and I saw the sadness in their faces).
    Nevertheless, my childhood was not all bad. I had/have a supporting family. My parents are awesome and my two sisters are amazing. All my family taught me to be strong.
    Nowadays I am in remission but I konw that this was not possible without them, my fantastic reumathologist and my Enbrel shots. And of course, all the texts in these amazing RA community helped me a lot.

    P. S.1: Sorry for this long outburst.
    P. S.2: As English is not my native language, I apologize for any spelling and syntax errors.

  • Kelly Mack moderator author
    9 months ago

    Hi Ana, thanks so much for your comment! No need to apologize for the length–I enjoyed reading every word. 🙂 It feels great to be able to connect with other JRA kids and learn that we had similar perspectives about the experience. Really glad that you have such a supportive family. Congrats on being in remission! Hope that you continue to find support and fellowship here. Thanks so much for reading and your kind comments. Best, Kelly (RheumatoidArthritis.net Team Member)

  • Monica Y. Sengupta moderator
    9 months ago

    Hi Ana!! Thank you for reaching out and please, never apologize for long comments!! I love when community members share their stories no matter the length. I am so glad you related to this article and you also wrote eloquently about your experience.

    It sounds like you are a very strong and inspiring person and I am glad you look back on your childhood with love and perseverance. I am glad you are in remission now! All the best and please keep in touch! ~Monica

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