Being Diagnosed with Juvenile Arthritis as a Teenager Is Tough

Being Diagnosed with Juvenile Arthritis as a Teenager Is Tough
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At 13, I found a love for fashion history. I regularly scrolled online archives of fashion photos, and my favorites detailed the styles of the day for children’s and young ladies’ clothing. Ironically, I couldn’t stand looking at pictures of myself at the time. 

The person I saw in my yearbook pictures didn’t feel like me. My face was bloated, and I had acne almost everywhere. Having been a skinny child, it was hard coping with weight gain and filling into a woman’s form.

To make matters worse, I also was dealing with the physical effects of juvenile arthritis, including swelling, redness, clumsiness, and visible side effects from treatments, such as bloating. I hid under giant sweaters and baggy jeans for a long time — a far cry from the party dresses I admired in vintage magazines.

Although I’ve suffered from JA since I was a small child, I wasn’t diagnosed until my preteen years, when it became more severe. In my case, I was just one of many young people who take years and many doctors to get a diagnosis. But for some kids, the onset of JA and puberty happen at about the same time.

Sometimes I wonder what it would’ve been like if I were diagnosed as a young child. Would I have been able to cope better? I’m not sure, as every age has its challenges. But adolescence is a particularly emotional time.

Puberty complicates things

Puberty is such a vulnerable, painful time already when many start battling depression. But going through the process of being diagnosed with JA and struggling to find a treatment that works is cruel and unusual punishment. Regular medical exams don’t do much for the self-esteem, either. There were many times it felt like my body was betraying me and morphing into something I hardly recognized.

Is it water weight or a growth spurt? Are the acne breakouts due to side effects or hormones? Growing pains or JA? Many teens with JA have asked these questions, and there’s usually not a straightforward answer.

Teens need to recognize that they’re going through two significant changes that will affect them physically, mentally, and emotionally. At the time, I didn’t understand why I was so upset and insecure. I wish someone affirmed that it was OK to feel so vulnerable.

Attempting to take control

It’s no secret that teens with chronic illnesses can be resistant to medical treatments, and I was no exception. I had a hard time dealing with the side effects of my treatments, and sometimes I blamed all my problems on the medications. I often thought, “If I didn’t have to take this, I wouldn’t break out, gain weight, or feel uncomfortable.” 

Although some side effects were difficult to cope with, treatments didn’t cause every issue I had. But it felt so much better to blame everything that made me uncomfortable on something I felt I had some control over, such as “forgetting” to take it.

Eventually, things changed. At 15, I begged the rheumatologist to take me off a medicine I hated and was put on something else. That treatment ended up helping a great deal and had minimal side effects. I also had finished most of my growing, so I stopped dealing with those changes. Things got better when I felt comfortable, and I began to feel like I had some control. I had regained hope.

Don’t minimize their experiences

Parents should try to be sympathetic and understand that their child is going through a lot. It might be tempting to dismiss those feelings as “teen drama” or being “overdramatic.” But doing that minimizes the child’s experience. 

I won’t say I wasn’t dramatic. But there were times I was genuinely hurting and uncomfortable, and being dismissed at those times was crushing. I just wanted someone to listen sympathetically and try to see my point of view. Therapy is especially helpful, as therapists can identify issues and suggest ways your teen can take an appropriate amount of control.

Looking back

I still cringe when looking at old photos, but not because I think I’m ugly. (We all had that phase.) I looked so uncomfortable at the time, like I wanted to crawl out of my skin. It hurts to remember it.

But photographs aren’t painful anymore. My boyfriend is very good at capturing candid shots, which are my favorite. While I’m not obsessed with taking my picture, I appreciate all the nice shots he gets. My face is round and jolly, and my hair is always fly-away, but in an enduring way.

I look forward to the day I can look back on that photo and think, “Why was that outfit fashionable? Oh well, at least I look happy!”

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Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.

Elizabeth Medeiros is a young adult who has dealt with juvenile arthritis since she was a small child. However, her pain hasn’t stopped her from working on a product design degree in Boston. Her passion is to create products that make life easier for the chronically ill, such as shoes and walking canes. When she’s not in class, Elizabeth enjoys writing about how she’s coped with arthritis at such a young age. You can find more of her writings at ArthritisGirl.Blogspot.com and on Instagram @GirlWithArthritis.
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Elizabeth Medeiros is a young adult who has dealt with juvenile arthritis since she was a small child. However, her pain hasn’t stopped her from working on a product design degree in Boston. Her passion is to create products that make life easier for the chronically ill, such as shoes and walking canes. When she’s not in class, Elizabeth enjoys writing about how she’s coped with arthritis at such a young age. You can find more of her writings at ArthritisGirl.Blogspot.com and on Instagram @GirlWithArthritis.

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