Spoonies: The Unseen Warriors
Living with chronic illness is a battle that many people face. For those who experience chronic fatigue, pain, brain fog, and other debilitating symptoms, each day can be a struggle. These individuals often refer to themselves as "spoonies," a term coined by Christine Miserandino in her famous "Spoon Theory" essay to describe her experience of living with Lupus.
The chronic illness experience can be difficult to understand, but the Spoon Theory can help. It uses the metaphor of "spoons" to represent units of energy. According to Spoon Theory, chronically ill folks have a limited number of spoons each day, and every activity performed throughout the day costs a certain amount of spoons. For instance, getting dressed may cost one spoon, while taking a shower may cost three spoons.
Managing daily activities can be a daunting task for spoonies. We must carefully prioritize and plan each day to ensure we have enough spoons to get through it. Unfortunately, this often requires sacrificing basic self-care tasks, social activities, and other things that many non-disabled people take for granted.
Credit: Slowly Made Art
Unfortunately, spoonies often suffer in silence due to the often invisible nature of their conditions. This can lead to misunderstanding and judgment from others who don't understand the extent of our chronic pain and fatigue. Spoonies are often told, "You don't look sick," and are accused of "faking it" or "just being lazy," which can be incredibly hurtful and frustrating for someone already dealing with a great deal of physical and emotional pain. And even for spoonies who are screaming to be heard, dismissal and invalidation are everyday experiences, including from healthcare providers. This adds to the already heavy physical and emotional burden we carry each day.
However, spoonies are some of the toughest and most badass people out there. We fight daily battles that most people cannot even imagine. Like any other human, we deserve compassion, support, and respect. If you know someone who is a spoonie, take the time to learn about their illness and try to understand what they're going through. Please support them in any way you can. For instance, if your spoonie loved one is experiencing a flare-up, you can help by checking in with a text or call or spending time with them. Chronic illness can be an incredibly isolating and lonely experience, and knowing that someone is there for us can make all the difference. If they need quiet time and rest, and you have the time and ability, consider running an errand for them, such as picking up a prescription or meal. If you are a manager and the nature of the work allows for it, offer remote work accommodations to your chronically ill employees. Chronic illness is a form of disability, and remote work accommodations can help reduce stress, fatigue, and flare-ups, allowing us to work and rest more effectively and comfortably. Above all, listen to spoonies and believe what we tell you. Let's show up for each other to ensure everyone's experiences are heard and validated.
If you are a spoonie yourself, know that you are not alone. There exists a whole community of people who can empathize with your struggles. Reach out to others, join support groups (such as my own group, the Spoonie Support Space), and try not to give up hope. It is completely normal to feel anger and grief about your body; however, this is a gentle reminder that you are not broken. You are a warrior, and your experience is valid. You hold value everywhere you go, and your worth is inherent. You are enough exactly as you are.
Niki’s group, Spoonie Support Space, meets Fridays online at 4 pm. Contact Niki to join!