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“Invisible” Illness

When it all started

I was diagnosed with juvenile idiopathic arthritis at 18 months, Crohn's at 3 years old, and after that, uveitis. I never really found relief, and remember most of my childhood in the hospital. I was always doing something scary like pokes or procedures. I had a mediport and a g-tube and once relied on tpn. I eventually had an ileostomy placed because I never found relief and my Crohn's got very life-threatening. I was little, I needed to grow. and that’s what the ostomy gave me- the chance to grow and be healthy! My ostomy was made permanent a few years later after I formed more fistulas. My Crohn's has been at bay ever since! It's so relieving to not have to deal with that in my teen years, as I have always had lots going on with my arthritis.

Fake it till you make it

I never got full relief from my arthritis either, as it worsened into my teen years, I got a wheelchair. I relied on it for a while as my arthritis got so bad I couldn’t touch my feet to the floor, or roll over in bed even. It was frustrating. I relied on steroids to get me through, for years. One time I got an infusion of 1000 mg of steroids but that didn’t work either, joint aspirations and steroids into my joints barely worked. I was used to limping and being stiff at this point. Until I tried Actemra infusions, at first they didn’t work but suddenly my numbers normalized. From my ESR being in the hundreds to now no signs of active inflammation!

Putting the “chronic” in chronic illness

I'm so thankful those parts of me are under control. But it's hard to be thankful when I’m still suffering in other ways. Over the years I developed POTS which makes it hard for me to do anything without my heart rate rising and making me just want to drop to the floor. Not to mention the brain fog and fatigue. It makes school so difficult. Osteoporosis and adrenal insufficiency are just a few more of my struggles because of all the steroids I was on. Now I’m “medically complex” and my doctors like to give up on me when I present something new.

My journey is far from over

I always have been known for being positive throughout it all. But that doesn’t mean my struggles are any less. There’s something to be gained from my experiences, whether it’s me or another person that benefits. I have made amazing friends in the chronic illness community and I strive to educate others on how invisible these diseases may seem. It's so important to know that there’s much more to illness than just a name. One day I aspire to work in the medical field to make a true difference for kids like me.

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17 years old with complex chronic illnesses. Raising awareness about the reality of chronic illness. bad and good :)

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Rachel Bender

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“Invisible” Illness

I was diagnosed with juvenile idiopathic arthritis at 18 months, crohns at 3 years old, and after that, uveitis. I never really found relief