The original Spoon Theory was written by Christine Miserandino of ButYouDontLookSick.com. A few days ago, I went onto my Instagram account and expanded upon this definition. A ‘Shadow Spoonie’ is a person living with chronic pain, mystery symptoms, fatigue, etc., and who has yet to get a diagnosis for these symptoms.
They feel a part of the spoonie community, but, at the same time, they are in the shadows. They go to doctor after doctor, have test after test, get referral after referral, and yet, they are still told that “nothing is wrong”.
As someone who experienced this from childhood to the age of 22, I completely understand what it’s like to be a shadow spoonie. It wasn’t until I was 90 pounds, my hair was falling out, and I barely had the energy to get out of bed that a naturopathic physician discovered that my severe, undiagnosed gluten intolerance was rapidly killing me.
I also found out I had a severe vitamin D deficiency due to malabsorption of nutrients and ITP, an autoimmune blood clotting disorder.
Before I found out any of this, I did the same things those who struggle with mystery symptoms are still doing today; I fought an uphill battle with the kind of tenacity and determination only a person who is absolutely desperate to figure out what’s causing their pain can muster.
Shadow Spoonies Are Warriors
We are warriors fighting an unseen monster every day. We are also battling for those around us to even believe that there’s a monster in the first place. This type of invalidation day in and day out can take it out of even the strongest among us.
You’re not alone.
Spoonies and Shadow Spoonies Unite
What I want you to do is this:
If you have mystery symptoms you and your doctor have not been able to pinpoint the cause of, write them down in the comments. Spoonies, those of you who have official diagnoses, read these comments, and, if these symptoms sound familiar to you, comment what you think their condition(s) could be.
This campaign is not a substitute for medical advice. Since we are not medical professionals, we cannot do that. However, we CAN help nudge each other in the right direction by sharing our experiences and offering insights, ideas, and suggestions that the person struggling may never have thought of before.
Let’s do this!!
Comment your mystery symptoms below. Respond to the comments if you have ideas of what the conditions could be, and let’s keep this going!
Share this with everyone on your social networks with #shadowspoonie. Let’s make this go viral, so we can help each other in a world where people with undiagnosed chronic illness continue to fall through the cracks!
Love and light,