'Coming Out' as a Spoonie

04/08/2015 09:44 am ET | Updated Jun 08, 2015

If you know what a "spoonie" is, then odds are you may be one yourself. A spoonie can refer to any individual who suffers from a chronic illness. The term originated from a post written by Christine Miserandino entitled The Spoon Theory. Miserandino hypothetically measures her ability to carry out daily tasks by counting spoons, to show that while sometimes she has an abundance of spoons, other times she comes up short. (If you haven't read the post yet, it is definitely worth checking out.) Since that post, "spoonie" and "#spoonie" have been used on sites like tumblr, to connect people living with chronic illnesses.

Chronic illnesses can range from fibromyalgia to Lupus or chronic Lyme disease, to name just a few examples. These illnesses are often invisible; to most people, spoonies may appear healthy and able-bodied, especially when they are young. The daily feeling of being invisible can be one of the most challenging parts of being a spoonie. After a certain point in any relationship, one might decide whether to "come out" and reveal their medical condition.

Very recently, I've gotten in the habit of making my illness as public as possible. (Clearly, since I'm writing this blog post!) But until a few weeks ago, I would go about my daily activities -- going to class, attending club meetings, hanging out with friends, without mentioning (or downplaying) my physical discomfort.

I have a form of chronic migraine that takes the shape of a constant, daily headache, one that's been around for over two years now. I've also got chronic subjective dizziness and chronic fatigue syndrome. As you might imagine, telling my story can be exhausting. I am constantly debating between outing myself and flying under the radar. If I am upfront about my illness, I run the risk of being emotionally triggered by people's reactions. Hearing "have you seen a doctor about this?" or "have you tried x?" or "you don't look sick!" can get pretty old. Everyone is coming from a good place, and naturally, most people want to help. But what they typically do not realize is that self-described spoonies often see doctors every week, sometimes every day. And sometimes they try everything.

But then there are the people who respond with genuine compassion and support. These people include the wonderful friends who say, "You are so strong," or ask if there is anything they can do to help. Spoonies likely do not out themselves for pity, but often it is for the sake of convenience. If I bail on plans last minute, or if I'm particularly quiet some days, I do not need to come up with excuses. I can also start asking for help when I need it, without re-explaining everything.

Of course, there are times when I remain invisible. Unless I wear a t-shirt that says, "Hi! I'm in constant pain!" then I don't think that person at the coffee shop will know. To them, I'm just another girl ordering an iced latte. Chronic pain or illness is just one kind of invisibility. If I were gay or non-binary, I would face a whole different set of obstacles that I cannot speak to personally. But I can play the part of an able-bodied person for a short amount of time -- say, the time it takes to finish my coffee -- much like another individual may be able to "pass" as straight, cis, etc.

Coming out allows one to shift from invisible to visible in a culture of assumed social norms. When I reveal my illness, I expose a piece of my identity. Of course, I am hopeful that my pain will not be with me for the rest of my life and am beyond grateful for the pain-free moments. I feel incredibly lucky to have such amazing friends and family, who remind me that I am more than the pain. But for now, anyway, I am still a spoonie.