Why the Spoonie Community Is So Important

Those who struggle cannot survive alone for long. No one really can, even if they aren’t enduring trials, but those who are struggling especially cannot. We need our people. We need support. We need care. We cannot face this journey alone. And I’m thankful we don’t have to.

While living with a chronic illness (or multiple illnesses) can feel incredibly isolating, it is helpful to remember we are not alone in the battle. There are millions of people around the world living with similar stories, and together, they form something special: a community.

The definition of community is “a unified body of individuals.” This is true for those who are sick. We are all individuals. We each have a unique story to tell. But we are all united by something that runs deep, something only genuinely understood when you are a part of it. Those who are spoonies can understand each other. They can relate. They can empathize.

They know how being sick changes your life dramatically. They know the ups and the downs, the pain, the despair. They know the severity of the struggles. They also know the life lessons that come with it.

Yes, there can be a nasty side to the spoonie community. Thankfully it doesn’t come out all that often, but it is present at times. The silent judgments of each other. The open comparisons. The jealousy. The drama. The bitterness. I have seen it and felt it and experienced it. But that is not what this community is about, and I don’t think any of us want that in the end.

At its root, the spoonie community is about love and support and encouragement and camaraderie and unity and morale. It is about being there for each other, working together, helping each other through the good times and the bad. It’s about being about to post on Facebook when you need advice. It’s about being able to scroll through Instagram and say “Yes, me too. I’m feeling that” instead of being confronted with everyone else’s “perfect” lives. It’s about messaging someone across the world when you need a friend and no one around you is there for you. It’s about binding together to bring awareness to the silent struggling so many people dismiss.

This is a huge part of why I write so much about being sick. Because this community, these people, need a voice – an advocate in a world that cannot understand what they are experiencing.

People wonder why we use the term “spoonie.” Others have questioned me about why I want to “identify myself” with that term and with being sick. I don’t want to put my identity in it. I am so much more than a sick woman. But ultimately, the term “spoonie” isn’t about identity. It’s about community. And it’s a community that – while I didn’t choose – I am proud to be a part of.

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