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The 5 Worst Feelings I've Had Since My Rheumatoid Arthritis Diagnosis

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There’s nothing funny about pain. There is nothing funny about not being able to uncurl and curl your hands or walk up and down a flight of stairs without crying. There is nothing funny about feeling like you’re 80 years old, when you’re only 31.

I would know because I’m still trying to find the funny in it. I was diagnosed with rheumatoid arthritis (RA) a year and a half ago, and I’ve been trying ever since to find the funny. See, that’s my thing. Jokes. There are very few things I won’t or can’t make jokes about. But when I found myself crying in pain upon waking up and having to force my joints to move enough to get out of bed, I found my brain without witty comments to sprinkle into conversation about it. Haha, look at how hard it is for me to pick up my toddler!

I wound up in the emergency room where I was diagnosed with RA. I should have seen it coming; it’s in my family. But I’ve been spoiled with good health for my whole life, so chronic illness never occurred to me. Even after gaining a lot of weight due to my hypothyroidism, having a second chronic illness didn’t occur to me. But there I was, a 31-year-old with arthritis. Ugh. “How unglamorous,” I told my best friend. “It’s an elderly disease,” I told her. “How undignified and unattractive,” I fake-griped to my fiance. I tried to push on people how “cool girl” I was being about it, my biggest gripe being I couldn’t have wine on my med and that it was so not sexy to have a “grandma disease.”

I think I’m finally in a place, though, where I want to talk about the realities of how RA makes me feel. No jokes. These are the… let’s call them “the bottom 5” feelings I’ve had since the diagnosis:

1) The first time I saw a rheumatologist, he put me on methotrexate, after telling me how I could absolutely not get pregnant while on it and that I also might be on it for years to stay out of pain. I sat in the car riding to the pharmacy to pick it up and wept thinking about how much I had always wanted to have two children and that maybe now I would have to choose between adding to our family or staying out of debilitating pain. I felt robbed, cheated, and a little useless. How could my body do this to me? How could I be OK with not being able to have another baby if and when we chose to? I have told myself to focus instead on the fact that our daughter is the love of our lives and that I have a little 3-year-old blessing to give my attention and love of books to. I could never have another baby, and I still would not be cheated. Some days it’s easy to see things that way. Some days I see mothers with toddlers and sweet impossibly small little babies and my eyes well up.

2) There came a moment when I realized RA was going to hinder my ability to work the way I wanted to. I had been a nanny for years before having my daughter and started working retail almost a year ago to start contributing financially at home. I have always worked, have always taken pride in working hard and a lot. Except now, when my fiance and I talk about my changing jobs to make more money, I feel a tightening in my head when I think about losing a job due to, ugh, chronic illness. The workhorse that was my mother would be so disappointed, I have misguidedly told myself over and over again. I have had to fight that voice hard to tell it over and over again that what matters is I keep trying to get better, I am doing my best and the people who love me know that.

3) I’ve needed to lose some degree of weight for a while now. “Curvy,” I put on my OkCupid dating profile when I met my now fiance. But when my thyroid acted up, I gained more weight than I knew I ever could. I went down 26 pounds within weeks of having my daughter and then within mere months, gained it back plus another 45. I threw my back out all the time, breathed heavy walking almost anywhere… the whole nine yards. Guess what’s really hard to do when you have RA that isn’t under control? Run, dance, workout in any consistent and substantial way… you get the idea. I’ve had to reimagine this weight loss journey in a major way and being slowed down from becoming the cute, Zumba-doing mom I always wanted to be has been quite frankly, graceless and frustrating. I want to move and move and get more fit, smaller, healthier… and clinging to the ounces that come off instead of pounds is a fight. I mean come on… I have to have finger-curling pain and gain weight?  The fact is though, I’ve lost 65 pounds in the last year. I’ve gained back a little, but I keep taking it back off. I focus on how I can (when I’m flare-up free) walk up stairs without a break to huff, puff and blow my self-esteem in.

4) Having your body refuse to move quickly doesn’t make walking around with your friends much fun. I detest not being able to keep up with people, to have to make them wait for me or walk slowly to keep pace with me. I’m a New Yorker, and we don’t do slow walking. Except that sometimes now I’m the slow, cumbersome-feeling girl trying to rush off the bus so the people behind me don’t run me down in an attempt to be the first in line for the next bus they need to the train to the city for the… and so on. I’ve gone from rushing from one place to another, beating the bus across town, to freezing while practically crawling down the street in a rainstorm because my knees can’t go any faster in this damp weather so get off my damn lawn. The only solutions to this one are purely practical. I leave to get somewhere earlier than I normally would so I’m not late. I try to make social plans that won’t require much walking or at least not much “challenging” walking. Still though. I used to be the one my mom had to ask to slow down. I talk too fast, and I used to walk like if the hare actually had the insight to stay the hell awake and crush that race. Now I’m the tortoise who will, I tell myself, get there eventually.

5) Will this happen to my daughter? That’s the one that crops up when the pain is at its worst. Did I, along with curly hair and a thousand yard stare, give my daughter RA? Is she doomed to one day start to feel more and more stiff and to have her knuckles feel like hot coals swelling under her skin? The guilt is strong. It’s also ridiculous, I know, but it rears up nonetheless. I’m a mother — my job is to protect her from pain, and it is only telling myself over and over again that there is no universe in which this illness is my doing that keeps it at bay.

I’m working on it. I find myself saying that all the time. I’m working on feeling better, on ridding my body of pain. I’m working on not feeling bulbous and slow because my knees aren’t going to let me get out of this chair without help. I’m working on getting past the shame of telling future employers that I have this illness so they’re not surprised when it rears its head. I don’t know when, if ever, these thoughts will stop popping up, but I know if they never do, I want to be able to say I enjoyed the hell out of my life anyway to the best of my hobbled, roly-poly abilities. To that end, I’m going to get in bed now. I have hella meds to take in the morning!

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Thinkstock photo by Michael Blann

Originally published: January 18, 2017
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