Young and In...RA?

By Monica Y. Sengupta

July 23, 2018

Rheumatoid Arthritis presents a unique set of challenges that most people cannot fathom. This autoimmune condition causes odd swelling, pain beyond reason and asymmetrical disability; not to mention, heightened risk of other illnesses.

However, being young with RA/RD presents an even more interesting dilemma: dealing with a chronic condition that ages your body while your mind stays fresh. Kids have such a beautiful outlook on life. They only know what is right in front of them. Young adults also deal with a similar situation. They are about to embark on a new journey that is completely different from anything they know.

I really looked forward to my time after college because of my newfound freedom. I was going to move out on my own, get a full-time job and just live a fun carefree life. Except, I didn’t. Instead, I lost my independence, I lost my mobility, and, at the time, my options.

I was looking forward to my life.

As a 20-something, I looked forward to graduate school which I deferred. I looked forward to making my own money full-time which I couldn’t manage. I looked forward to my independence, which was no longer an option because there were a lot of days I needed help. I looked forward to meeting new people, maybe even dating but definitely didn’t have the energy. I wanted to rock-climb all the time, well, do I need to even say it?

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I no longer looked forward to how my life would evolve and suddenly I felt years older. I no longer looked forward to my future. It was upon me and I didn’t like what I saw. At the time of diagnosis I had very little knowledge of RA. I knew it wasn’t OA but felt just as disabled. Wasn’t this supposed to be me at 80 years old; not 20? What was my life going to be like if at this young age I couldn’t pick up my 10 pound dog, continue school or even keep up with full-time work? How was I going to have a family and take care of a child? I now know that I can still do whatever I want but at the time I felt deflated and defeated; two emotions I rarely experienced and so early in life.

I’m in my 20s but I can’t act like it.

Most weekends I stare out the window and wish I could go for that hike with my dog or go to that party with my friends. I can’t. I’m in my 20s but I can’t act like it. I can’t drink like my peers or experience what it’s like to accidentally drink too much. I can’t experience the hangover. I can’t experience sleeping in on the weekends because I stayed out too late. I can’t be a night owl. I can’t go to work functions. I can’t go on backpacking trips or long plane rides. I can’t even go out! I can’t move every two years and meet lots of new people. I can’t date. I can’t even stay awake! I can’t go to movies because I can’t sit for very long. I can’t protest anything! I can’t make stupid mistakes or be obnoxiously pretentious. I can’t pretend to have everything figured out. I can’t…

I am kind of drawing a blank right now because I don’t actually know what young adults do in their spare time. I have a very skewed idea since I can’t do very much aside from work and sleep. But, I figure being young is the definition of freedom and learning. I often feel like I’m stuck in a rut because I’m chained to my illness. Yes, I do my best to live my life as best I can but RA can be very restrictive and the complete opposite of a young adult. How do I act my age when my body isn’t complying?

Let me know if you are/were young and with RA. I’d love to know how you managed!

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.

Join the conversation

By Lawrence 'rick' Phillips Moderator
July 24, 2018
I am so glad i had my 20's to accomplish what I wanted. Yes I had some issues, but I was full bore 24/7/365 to get to my desired outcome. Once there, well,, that was not the hoped for outcome. i hope you get that chance someday. It is fun and challenging and difficult. When you do you will love it.
1. By Monica Y. Sengupta Moderator
 July 25, 2018
 Thanks Rick!!! I have no doubts I will get there...someday...maybe...
By Richard Faust
July 24, 2018
Hey Monica. RA at a young age certainly does change things. Don't know if you have seen (and for everyone out there) this article from Kelly on being a child with RA - younger, but same basic concept: <a href='https://rheumatoidarthritis.net/living/being-a-child/.' target='_blank' rel='noopener noreferrer nofollow'>https://rheumatoidarthritis.net/living/being-a-child/.</a> She notes "It’s a crazy juxtaposition— feeling at once like a sick old person while still being a child." At the same sometimes one has to be a little crazy in pursuing life: <a href='https://rheumatoidarthritis.net/living/am-i-crazy/.' target='_blank' rel='noopener noreferrer nofollow'>https://rheumatoidarthritis.net/living/am-i-crazy/.</a> Best, Richard (RheumatoidArthritis.net Team)
1. By Monica Y. Sengupta Moderator
 August 3, 2018
 Thank you so much, Richard!!! Much appreciated 😀
By meertn
August 3, 2018
The for sharing your story, as a young adult with arthritis it is sometimes difficult to put into words what it is like to feel young and old at the same time. I know the feeling you are describing, I try to spend my time being young when I can like going to the movies or out to eat and shopping with friends. The times I feel old, I try to relax and take bubble baths, watch funny movies, and take up a chill hobby like knitting.
1. By Monica Y. Sengupta Moderator
 August 3, 2018
 Thanks for commenting on my article, Nicole, and for sharing your story!! I kind of had to giggle because you mentioned all the things I enjoy doing socially -- then immediately afterwards, I have to relax and binge online streaming because my body revolts! All the best, Monica
By rockcandi
August 5, 2018
Thank you for sharing this Monica. From reading some of your other articles I knew that you were working hard at school to achieve a career at the time of your diagnosis and weren't partying or doing the things that I was doing at that age. I always knew I wanted to be a mom and then as a teen I knew I wanted to be a wife too. (It wasn't until then that I wanted a husband lol. Before then I'd told my mom, and fully meant it, that I was going to get married long enough to have kids and then leave my husband. To which she always said that you don't have to be married to have kids but I never understood how that was possible.😀 I knew in my early 20s that the JRA that had disabled me as a young child was slowly but surely coming back to rear it's ugly head. But I didn't have insurance or the money to see a doctor. I had to go to the community (discount) clinic and my doctor there wouldn't listen to me. My husband and I have been together since our freshman year in HS so I thought we'd start a family very young, just like I'd always wanted. We tried at ages 19 and 21 but that's another story. My point is that in my 20s I was battling this illness but w/o a dxd but bc of the loss of our two babies-the main thing I wanted in my life- I was too depressed to fight for a dxd. And too focused on what I was missing by not having little ones that my JRA took a backseat. I partied and worked and tried to take care of our home. When I overdid it I always suffered but didn't have a grip on my illness so I didn't understand why. And I honestly didn't care much bc what did it matter if I could get out of bed. But when I had a major flare and had been under the care of two amazing women, my newer doctor at the clinic and my rheumy at the university hospital an hour from home, I was forced to make a decision to either give up and end up in a nursing home in my late 20s/early 30s, or fight. I chose to fight and thank God I did. He blessed us with our son almost 5 years after I was re-diagnosed. It's extremely hard to be an almost 37 year old mom with active JRA, Lupus, Fibromyalgia, among others and a just as active 2 1/2 year old son. Although I would obviously desire to not have these diseases, it's still completely worth having my son in the midst of it all.
By beccafloyd
September 22, 2018
I just joined this group, and came upon this thread as it spoke to my own experience with JRA. I was diagnosed at age 4, and have been through countless treatments, procedures, medications, hospital stays, and so much more in the 30 years since. Now at 35, I find myself living a life similar to what I imagine an elderly, sick person would... I'm unable to work, have been dealing with my current flare for several years now, and fight with insomnia and lethargy on a daily basis. I do have much to be grateful for, I have a loving, supportive husband and great friends... but I also feel as though my life has stalled. I also lost both my mother and my brother (both of whom I was very, very close to) within 8 months of each other due to sudden, unexpected and catastrophic illness. Since they died, I feel as though the 3 years since are a blur. I'm doing the best I can given the grief and illness I live with, but I also struggle with the question, will my life ever get better again? Or is this the best it's going to get as I age and suffer more and more effects of my illness. I'm grateful to have found this group, I've never met anyone who could relate to my experience, and I think that alone will be helpful going forward. I try to remind myself that others have it so much worse than I do, but that only serves to make me feel guilty for feeling the way I do, without improving my outlook in any way. Living with this illness as a child and young adult was always difficult, but only recently have I started to feel as though the best of my life has already been lived. I'm in no way suicidal, I don't want to give that impression, in fact since losing my loved ones I'm quite terrified of death, something else I am working on with my therapist. In addition to a therapist, I have a primary care doctor, pain specialist, rheumatologist, and dentist, and I'm good at keeping up on my treatments and following my doctors advice. I guess I just feel tired. Tired of the pain, emotional and physical, the doctors visits, pharmacy visits, not to mention the exorbitant cost of treating and maintaining my illness. It can all be quite overwhelming at times. My husband and I do travel a fair amount, and try to have one vacation planned soon after returning from another so I always have something to look forward to, and I know I'm very lucky to have the means for this. I just really miss having the zest for life I had in my twenties. I'm hoping that by joining this group, I can seek knowledge and advice from others who have similar experiences, and how they maintain the desire to get up and show up for each day. Thanks for reading.