Juvenile Arthritis: Elizabeth's story – "Invisible doesn't mean invalid"

Posted on July 7, 2015 by admin

Today I’m fortunate to have Elizabeth sharing her story with me—and now, all of our readers! Elizabeth lives with psoriatic arthritis—a form of arthritis, or swelling of the joints, that often affects people living with psoriasis, a skin condition [1]. Elizabeth provided me a lot of detail by e-mail, and given that her third sentence involves rollercoasters, I going to let her do the storytelling—I’ll add my comments in italics when needed!  Thanks for sharing, Elizabeth!

—–

the girl with arthritisMy name is Elizabeth, I’m 19 years old, and no, I do not have a nickname. I’m a city girl who loves to travel, and an ideal night is one spent exploring with good company. Sometimes friends refer to me as a ‘coaster junkie,’ and I can often be found at local amusement parks. My parents’ dream for me is to become a Disney Imagineer, and that seems like a good fit to me. I also have psoriatic arthritis.

My arthritis story is a difficult one to write, mostly because we’re not exactly sure when it began. When I was a toddler, my mum noticed I dragged my feet and they turned in an awful lot. Every doctor dismissed her concern, probably because she was a first time mother and they felt she was being too overprotective. Even in my earliest memories, I remember having achy joints in my legs and feet.

At the age of eight, I had a flare (when symptoms [of joint pain, and swelling] are very active) that I still call the worst flare of my life. It caused me to be hospitalized for a week, though [the flare] lasted longer. My hips were extremely painful to the point I could not be touched, and being moved left me screaming. I would never wish that pain on my worst enemy. I was diagnosed (incorrectly) with viral arthritis, and wasn’t actually correctly treated for it. When the fever broke and my joint pain became far less extreme, doctors didn’t care much anymore.

I still had a lot of pain in my hips, [which] gradually got worse with age. My mum constantly took me to new doctors, who would barely look at me and say things like “she has growing pains” or “she has tendonitis.” I was taken to “one of the greatest children’s hospitals in the nation” numerous times to be told it was nothing. At this point, my hips, knees, ankles, feet and back were affected. But when I was twelve, I finally had a doctor take me seriously. I was sent to pediatric rheumatology, and I was told I had Juvenile Psoriasis Arthritis. It’s a rarer form of JA [juvenile arthritis], and was only identified due to my toenails being affected by psoriasis and by my family history.

[By] the tender age of thirteen, I was very depressed [at the time of] my diagnosis. The treatments often made me feel ill. I never got to feel like a normal teenager. I lost my friends during the earliest years of my treatment because I was just too tired and sore to keep up with them. When you’re thirteen, it’s hard to have friends when you can’t walk the mall.

But things did get better. I gained a lot of confidence and close friends by attending a Juvenile Arthritis camp for a week—I wasn’t ‘the only one’ anymore. I began trying different arthritis treatments that began making me feel a little better. With my new energy, I went out and found friends at school. And even when side effects made me sick, I found I had made true friends [who stuck with me].

It didn’t feel like my family life had changed that much at the time, but looking back I realize the strain on my parents. The financial burden took its toll, especially because I had to be seen in the hospital once a month, with monthly blood tests. My parents did a good job of acting like nothing had changed too much at home, but my mum was always there to talk. I saw my mum constantly defending and protecting me, even when she was scared too. And that’s something I’ll always be grateful for.

Since being diagnosed, I’ve been on more treatments than I care to remember. It’s amazing how a disease most people think can be treated with a little ibuprofen actually requires potent medication. Some of these treatments seemed to have no affect on me what so ever. And still, some caused quite serious side effects: One began to affect my kidney function, and I lost ten pounds in just a few weeks! But it was necessary to try most of them to see what worked. A biologic called Enbrel worked very well for me, and I injected it twice a week. I wasn’t in remission taking it, but it got me to an amazing state of health. Unfortunately, I haven’t been able to take it for almost a year now—we are hoping that will change soon.

Due to the discontinuation of Enbrel, my arthritis is more severe than it was in the past. There are now days that I use a cane (which is pink, my favourite colour). My jaw is moderately damaged from disease activity, and my feet and ankles are beginning to show signs of damage. Not to mention, I’ve recently found my bones have lost a lot of mass and I’m at a very high risk for developing osteoporosis [a condition where the inner “spongy” bone spaces become larger and bones are more prone to breaking]. Although my arthritis is the worse it’s been in a very long time, I’ve come to a place of acceptance that I couldn’t achieve in the past. I would love to be better, but I realize this isn’t the case right now. I’m very fortunate that it isn’t worse, but if it does get worse I know I have a wonderful support system that will be there for me.

Sometimes when I tell people that I have arthritis, they tell me that they “have a sore knee, too”. I’m often told I’m too young to be in so much pain, so I must be faking. There are times people propose alternative treatments, and imply that I’m making myself sicker by not healing myself through juices and herbs. It makes me feel horrible and guilty, as if I’m the one who is causing my disease. That’s a stigma a lot of us live with since the pain is so invisible. Many times, even doctors suggest we’re making up the pain. I wish people wouldn’t question me because my disease is invisible: Invisible doesn’t mean invalid.

A few years ago, I started a blog called The Girl with Arthritis. I began sharing my thoughts about being chronically ill with the world, and that connected me to the chronic illness community online. Though I don’t seem to be a very active member according to my Facebook (The Girl with Arthritis) and Twitter accounts (@Arthritis_Girl), I’m constantly reading the social media and blogs of my fellow chronically ill brothers and sisters. I don’t exclusively read arthritis blogs either—I follow people with various diseases and disabilities. I take comfort in knowing that I’m not alone and seeing the ways others cope. I’m happy when they achieve a goal, and I’m very sad when they are struggling. They inspire me on days when I feel like pain and sickness are the only things in my future.

—-

Thanks, Elizabeth, for sharing your story with us! If you have questions for Elizabeth, please visit her on social media and check out her blog, or leave them below in the comments!

Leave Comment:

Your email address will not be published. Required fields are marked *

*
*
*