Summary: Arthritic Carly is back folks! After nearly 6 months in remission, 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, I will probably attend.)
It’s hard enough to come to terms with my nearly half a year of joint inflammation remission coming to an end, but it’s even harder to share this news with others. After almost six months, it feels as though I’ve forgotten how to be arthritic, and those around me have forgotten I’m disabled.
Like all things surrounding complex and chronic illnesses, I’m facing uncertainty. I’m uncertain if I’ll be able to get a hold of my old rheumatologist, I’m uncertain if I’ll be able to maintain my pace at school and work, I’m uncertain if I can keep doing all the things I love. Above all, I’m uncertain how to act. 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. For those not-so-close and not so arthritis-aware, they might be a little more unsure about what this means (literally – like what remission means.) While many of my peers and acquaintances have been fantastic listeners and do their best to understand my disabilities, most people 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.
There’s this strangest phenomenon that’s been happening to me ever since I became disabled at 16: gratitude where gratitude should not conventionally be. As I get 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 paediatric rheumatologist found inflammation in nearly every joint in my body. As she poked and prodded me, and as my twin and mother watched on, I began to recognize the extent and severity of my arthritis, and began to feel angry that I and others allowed it to get that far. At 16, I never believed I would enter remission.
Before we go further, please know that remission is not earned. You can change your diet, your habits, your lifestyle, and still not enter remission. Remission is not a value judgement 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 getting to remission is that when I was on steroids and biologics, the far-flung hope of remission kept me going through some very rough times. I lost my weight, my hair, my appetite, my personality – but I never lost that hope that things had to get better. And three and a half years later, things did.
Remission was fantastic. There is no shame in wanting to be in remission, and 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 – knowing that I was temporarily off treatment and that treatment worked was enough to sustain me in doing things I used to think impossible. I became a star student and never missed a class, I was a stand-out 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 very inconvenient) way of carrying on no matter what you’re going through. Losing remission won’t change who I am, in the same way having arthritis doesn’t change who I am. I’ll still give loud, energetic takes in class – I just might be sleeping on my desk in between them. I’ll still deliver at work and love my job – 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 still at 20 with active arthritis.
Juvenile idiopathic arthritis (JIA) is an autoimmune condition primarily causing inflammation in the joints in patients age 0-16. As JIA is a childhood disease, as patients age they either “grow out” of JIA and the disease goes away on its own, or they receive an “adult” diagnosis – which can include rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis. All autoimmune disorders can enter phases of remission, where a patient’s disease activity is paused. Remission can last weeks, months, years, and even for the rest of someone’s life. It is not uncommon for JIA patients to experience a few periods of remission within their lifetimes. The cause of remission, much like the cause of JIA, remains unknown.