A Letter to Myself, Pre-RA Diagnosis

An open letter to my younger self, before I was diagnosed with rheumatoid arthritis:

Dear Amanda,

There's so much I want to tell you about, but I'm going to start with the hard parts, because I know you're strong enough to handle them.

Diagnosis feels really scary

When you are 30 years old, you are diagnosed with 2 autoimmune diseases just a few months apart: Crohn's disease, an inflammatory disease of the intestines, which you begin showing symptoms of when you are 23; and rheumatoid arthritis, an inflammatory disease of the joints — one you already have symptoms for. This year feels really scary and overwhelming, but you also feel grateful for finally having answers.

Eventually, the pain will be more bearable

I know that you're struggling right now with persistent agony in your joints.

Sweet girl, the pain that wakes you up at night and cripples you during the days in your hips and knees — it's real. Don't stop telling your parents and your doctor about the way it makes you feel. It's not growing pains, and it won't just go away. In fact, it actually never really goes away, but eventually you do get on medicine that makes it more bearable. Please remember this, especially when it feels hopeless.

Keep telling the people around you

Tell your gym teachers that you can't run the mile. That it's going to cause you joint damage well into your adult life. Tell them you can bring in a note from your doctor or your parents, or you can write a paper about the history of the mile (you'll actually love this, I know you) but that you simply cannot and will not run it. Tell them this twice a year, every year until you're done with school.

Tell your dad to buy some bigger ice packs when he goes to the store.

Tell your friends that sitting cross-legged on the floor doesn't feel so good, and ask if you can all move to the couch (or to your super cool daybed). You'll all still laugh and eat treats and be kids, but you won't hurt as much after they all go home.

Treat yourself gently

Tell yourself that you're going to be okay, even when the pain feels unbearable, unshakeable, undeniable. When the swelling feels scary. When the stiffness surprises you in the worst ways.

When you have to limp to the bathtub, ask your mom to fill it with those special salts. They'll give you a little temporary relief. Ask for Tylenol (not Advil — long story, but that kind of medication can hurt your tummy) when the pain becomes too much.

Treat yourself gently. Talk about your limitations when you choose to become a competitive figure skater. Become one anyway. Think about wearing knee pads so when you smack them against the ice, you don't aggravate your joints. And when you do, give yourself grace for needing a few days of rest and ice. It's okay. The world isn't going to stop because you have to slow down.

Ask questions and advocate for yourself

Ask your doctor over and over again to investigate when your SED rates come back high time after time. Ask her to run a CRP test and to test you for antibodies. Maybe even suggest that she does some imaging studies, too.

Get louder. Ask about juvenile idiopathic arthritis. Ask again. Ask for a referral to a pediatric rheumatologist.

Be bold, and be brave, and know that clarity takes a long time to arrive, but when it does you are both grateful and angry. Know that you use that anger to advocate for yourself, and then you use it to start advocating for others.

You've got this

Know that you are okay, even when you don't feel like you are.

You've got this.

With hope,

Your older self