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Arthritic Carly 2.0: How I Feel After Losing Remission With Arthritis

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Arthritic Carly is back, folks! After nearly six months in remission from arthritis, my joint inflammation is back, and my immune system is ready to attack. My main challenge now is figuring out how to tell everyone the news without being subjected to pity. (If someone throws me an ironic celebratory party, though, I will probably attend.)

It’s hard enough to come to terms with my nearly six months of joint inflammation remission coming to an end, but it’s even harder to share this news with others. After several months in remission, it feels as though I’ve forgotten how to be arthritic, and those around me have forgotten I’m disabled.

As with many other complex chronic illnesses, I’m facing uncertainty. I’m uncertain about whether I’ll be able to get ahold of my old rheumatologist, I’m uncertain about whether I’ll be able to maintain my pace at school and work, and I’m uncertain about whether I can keep doing all of the things I love. Above all, I’m uncertain about how to act, how to tell others, and above all, how to deal with others’ disappointment that my remission is over. Those closest to me do not feel pity. Their empathy echoes my uncertainty, as we both are uncertain of what is to come but know we must brace for the worst. Those who are not so close and not so “arthritis aware,” though, might be a little more unsure about what this means for me (literally – like what the word “remission” means). While many of my friends and acquaintances have been fantastic listeners and do their best to understand my disabilities, most people I know don’t know arthritis can go into remission — let alone that remission is not forever.

I won’t fault them for that – I also forgot remission doesn’t last forever.

The strangest phenomenon has happened to me ever since I became disabled at 16: gratitude where gratitude would not conventionally be. As I feel overwhelmed by planning for my once-again-arthritic future, I’m grounded in gratitude that I entered remission in the first place. When I was diagnosed with juvenile idiopathic arthritis at 16, my pediatric rheumatologist found inflammation in nearly every joint in my body. As she poked and prodded, and as my twin and my mother looked on, I began to recognize the extent of my arthritis and began to feel angry that I and others allowed it to progress that far. At 16 years old, I never believed I would enter remission.

Before I go further, please know that remission is not earned. You can change your diet, your habits, and your lifestyle and still not enter remission. Remission is not a value judgment of your worth as a patient, as a disabled person, or as a human – it just happens, and no one knows why. What I can say about reaching remission is that when I was on certain medications, the far-flung hope of remission kept me going through some really rough times. I lost my hair, my appetite, and my personality – but I never lost hope that my health could get better. And three-and-a-half years later, my health did get better.

Remission was fantastic. There is no shame in wanting to be in remission — or in mourning when you lose it. There is also no shame in being disabled, receiving treatment, and asking for help. I don’t believe these things have to be mutually exclusive. In remission, I started my second year of university, aced my classes, rocked my extracurriculars, and fell in love. I had energy and optimism in ways I never had before — and knowing that I was temporarily off of treatment and that treatment worked for me was enough to sustain me in doing things I used to think were impossible. I became a star student and never missed a class. I was a standout employee and never missed a deadline. And now, I’m still doing all of these things — just with active arthritis.

Losing remission can make you feel like your world has stopped spinning — like everything comes crashing to a halt. But it doesn’t — life has a (sometimes inconvenient) way of carrying on no matter what you’re going through.

Losing remission won’t change who I am — in the same way that having arthritis doesn’t change who I am. I’ll still give my loud, energetic takes in class — I just might be sleeping on my desk in between them. I’ll still love my job and deliver at work — I just might take a break during meetings. I’ll still be “me” — the same way I was “me” at 16 with active arthritis, at 20 in remission, and at 20 with active arthritis again.

This story originally appeared on Carly Fox Disability Advocacy.
Getty image by PeopleImages.

Originally published: April 18, 2022
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