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Young Adult Onset vs. Juvenile Onset

Is one more challenging than the other?

By Annette Beach

If given the choice, would you rather live your life never having an ability or having an ability then loosing it?

“In 1986, I was diagnosed with Severe Crippling Poly-articulate Rheumatoid Arthritis. At the time of my diagnosis, I was physically strong, independent, athletic and 21 years old ...”

Typically when I’m asked to speak at an event or fundraiser, I open with something similar to the words above to give the audience a glimpse of who I was and my age at the time of onset. I then give information about the severity of my arthritis and share personal experiences of how the disease has affected my life as an individual, wife and mother.

Being diagnosed at the age of 21, I have spent my adult life facing challenges and battling this disease. While arthritis has not been good to me, I have always been grateful that my onset came during my adult years rather than as a child. Although my physical losses have been difficult, I feel fortunate to be able to reflect back on a relatively healthy childhood.

One of my young adult groups has had numerous discussions about adult onset versus juvenile onset. We’ve shared our views and opinions based on personal experiences, yet we have never been able to determine if one is worse than the other.

Some of my friends who were diagnosed at young ages feel they did not experience a physical loss because they never felt like they had the abilities to begin with. To them, the physical side has never existed so it’s not missed.

For those diagnosed as young adults, it’s entirely different. They experienced losses and feel sadness [not pity] for children who are limited and do not have the freedom to play as they did.

Share your thoughts. What is your experience and opinion? Do you believe arthritis at any age is bad or is one age group worse than the other? When responding, please include your age when diagnosed.

Mama.P

17 Jan 2012, 21:04

I am 33, and I was diagnosed at age 2. Aside from a short period in my twenties when I learned that steroids are not an option due to side effects, I have NEVER been pain free.

As a teenager, I did envy those who had had a chance to be active, but looking back as an adult, with babies of my own... I wouldn't give up my arthritis for anything. It formed my life in ways that almost nothing else could, and for it I am prouder, stronger, and smarter!

I chose a long time ago that my arthritis would not lead my life for me, and it hasn't. I have to adapt at times, and I make choices that aren't smart sometimes. BUT, I know that they are my choices to make. And, sometimes a day of not walking is worth the experience of the previous day!

I saw teenagers devastated by diagnosis, but I never had to have that (emotionally) painful experience. Arthritis was, is, and probably will continue to be, just a part of life for me

Charlene Clark

07 Jun 2011, 16:16

I was diagnosed with Rhuematoid Arthritis at the age of 30, My "A" factor, which determines the level of inflamation in my body, was high. Every day I woke with either a hand swollen or a foot swollen. It was very painful to wslk so I had to use crutches. I was miserable and my doctor could not find a pain medication that helped even a little amount. I was prayed for in church and that same hour all my symptoms left. I was without symptoms until 1998, at age 47, when I started having severe pain in my shoulders. I went undiagnosed for several years. I don't recall when I was finally diagnosed with Bursitis of both shoulders, but I underwent surgery to remove the Bursa sac of my Right shoulder in 2006. The surgery was unsuccesful, in my mind, because the pain persisted even afterwards. Then in 2008 I was diagnosed with Osteoarthritis and an un-named arthritis similar to Fybromyalgia. The Osteoartitis was upgraded to Degenerative Joint Disease. I suffered with very painful spasms in my ribs and was told by my PCP I had inflamation of my rib joints and I was given an anti-inflamatory drug. Another symptom I was experiencing was edema of my lower extremities. I was put om a water pill to help control the swelling. Two years later I started havimg High Blood Pressure. I have all my life had excellent blood pressure, so why the High pressure? After reading the articles in Arthritis Today, about Fybromyalgia, I became aware for the first time it could be related to the Fibromyalgia. I am no longer able to function enough to do my daily activities, I can only stand still in an upright position for three minutes. I cannot walk more than two yards withou such severe pain and fatigue, that I am forced to sit down or fall down. My body, as well as my mental state, have learned to accept the pain. The pain medication helps, but on my good days I am still in moderate pain. I also started suffering with severe depression, which eventually I ended up in the hospital and was given four types of medication,
My Rheumatologist perscribed heavy doses of pain medications for the Osteoarthritis and a well known medication for the symptoms of Fybromyalgia.
I just found out I have the Fibro-fog, but did not realize this until I read the article in this newsletter about the symptoms of Fybromyalgia. I have evey symptom mentioned about the Fog. This article has helped me tremendously and I now undestand so much more about Fibromyalgia and how it affects me.
Thank you for all yor help and for those testimonies that help me cope too.

Leeanna

19 Nov 2010, 13:13

i was diagnosed at five. and i have to say that i partially envy those of you how have had the opportunity to live your life to the fullest. i am now 17 and have had arthritis for more than half my life. i have had a really hard time with medications lately and its made me think about life as a whole.

i am doing a senior research paper on the concept of young adult onset vs. juvenile onset, and i have found a common theme. the people that have grown up with this disease envy those who have had a chance to live. however they dont seem to face the denial and hard time fully accepting the limitations that disease carries.

So it seems that this emotional roller coaster is a double edged sword, on one hand juveniles have no tendancy to wish what is now only old memories of sports teams and such but instead only envy of those who complain of new limits they have reached and the incredible pain theyre in, that we have felt since we can remember.

17 Apr 2010, 09:43

I was diagnosed at 30 (wow 4 yrs) My mother also has RA & there are times I feel like Society just doesn't get it..makes me so sad. While I am doing pretty good there are days that I feel sorry for myself...it sucks & some days I wish it would go away :(

Someone I don't even know has given me such an appreciation & zest for my life..."love love love"...so the days when I'm feeling crappy (which have been a lot lately) I have to remember I have such an amazing family, that I can breathe, be happy & remember there are ppl out there who do get it.

Janet

03 Dec 2009, 22:00

I was diagnosed with RA when I was 19 and I personally prefer I would've been diagnosed when I was a child. It feels like a part of me has died and can no longer do the things I used to do. As a kid I wouldn't miss anything, because there was nothing to miss, but as an adult, I feel I lost a lot. I can no longer dance, can no longer play, can no longer drink, go out. My life revolves around medicines, around doctors appointments and consistent lab tests. It's all new to me, it seems I can't get use to it. I think as a child it would've been easier to adapt to.

Cathy

05 Nov 2009, 18:43

I was 18 years old when symptoms occurred and diagnosed at 19. I guess I prefer that I was a young adult vs. a child because there are things that I enjoyed doing as a child, which I cannot do now, such as playing the drums and twirling a baton (seems like the same person shouldn't do those two things, but I did!). I'm glad I had the opportunity to do both - and although I wish I could play the drums again - I'm glad I was able to do so in high school.

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Young Adult Onset vs. Juvenile Onset

Is one more challenging than the other?

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