living with an invisible illness like RA

I See You


-Have symptoms that aren't visible
-Are able to function while in extreme pain
-Don't "seem sick"
-Are exhausted but still trying
-Are fighting a battle most people don't understand

I see you. I am proud of you.

(via @positivelyrheumatoid)

I came across this quote/meme on Twitter recently that made me stop and look at it again. Usually, I quickly scroll past most things on social media, but this one caught my attention and held it long enough for me to write it down myself. I didn't want to forget it. I wanted others, more people, especially non-chronic illness people (family, friends, caregivers) to see it too.

Invisible Symptoms

Most of my RA symptoms (pain, stiffness, fatigue, malaise, fevers, medication side effects) are not visible. Unless you look really closely at my swollen right foot and ankle or slightly misshapen and damaged right wrist, you would guess that I'm a healthy person and not struggling with immense pain every day. The cranky look on my face (hopefully it's not a permanent fixture) or an occasional limp might also give it away, but most of the time people have no clue that I have RA. They don't know how hard it is for me to walk around at a shopping mall, clean the house (or anything!), or just get out of bed in the morning.

Living with an invisible illness is difficult because you're constantly at a crossroad of sorts about how to live your life in an able-bodied society. I want to be "normal" and healthy. I don't want to be treated differently: discriminated against or condescended to with awkward "sympathies" or pity. Yet at the same time, trying to live as normal and active a life as possible with chronic pain is nearly impossible to do without feeling extremely lonely and isolated. Why? I have a secret life. It's a life full of great pain and sadness and struggle, and one that most people can't know or understand. There are many times I wish they could.

Functioning in Extreme Pain

One of the many reasons that those of us living with RA are "warriors" is because of this fact alone: we function and live while being in extreme pain. And most of the time, nobody knows it. We crawl out of bed in the morning and drag ourselves to work. We cook, we clean, we drive, we go shopping, we take care of kids/spouses/parents, we attend family gatherings, we meet with friends, we go to never-ending medical appointments, we travel, and we do a million other things. ALL WHILE BEING IN PAIN! Always. Always, always, always! We keep going and moving forward despite often wanting to just curl up and sleep for 100 years. Most people don't realize what a huge accomplishment this is.

"You Don't Seem Sick"

If you have RA or another "invisible illness," you've probably heard this a lot: "But you don't seem sick!" If you're also young, add the "well-meaning" exclamation of, "But you're too young!" to that. Well, I'm sorry to trick you here, but I am actually sick. I'm young and sick. And then once you try to inform the person who is insisting that you're too young and healthy-looking to have a chronic illness, the topic is often awkwardly dropped and you go back to talking about how the world is probably ending soon or some cute picture you saw on Instagram. We RA-ers get pretty good at honing our acting skills and blending in with the rest of the able-bodied world, yet, we are "sick." We're sick in body and spirit yet we persevere. And that's pretty awesome.

Exhaustion, Resilience

RA is exhausting in so many ways. Pain alone selfishly sucks all of your energy from you. Fatigue is also a common symptom of RA (so is anemia), which many people don't realize. Also exhausting are the demands that having RA puts on a person: countless medical appointments, financial struggles and medical debt, frustrating phone calls with healthcare providers and insurance companies, pharmacies that can't or won't fill prescriptions, incompetent doctors/nurses, and of course the mental and emotional stress of simply living with the constant unpredictability of this disease. You never know when you'll have your next flare-up or if your insurance won't cover your bills.

It's exhausting--all of it. But I'm still trying to keep moving forward and to live my best life possible. I don't want to give up.

Invisible Illness

As I've already said, living with an invisible illness is body and soul-crushingly hard. And it requires a lot of strength, perseverance, resilience, and courage. To my fellow RA friends and everyone else who quietly struggles with chronic illness and pain every day, I want you to know that I see all of these things in you. I SEE YOU. I do.

You are amazing. Please never forget it.

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