Is Visual Snow Syndrome a disease?
A disease refers to a health issue with a known origin or one that is usually identifiable through medical testing. Think blood and urine tests, MRIs, and X-Rays.
So, what is a syndrome?
A syndrome is multiple symptoms without a clear cause. Medical tests nearly always come back normal. Generally, doctors then conduct more tests to try and eliminate the possibility of other diseases. For those with Visual Snow Syndrome, this dilemma can be a rock and a hard place as more testing creates even more anxiety. More testing, with respect to VSS, can lead doctors farther away from the true diagnosis. Additionally, when those test results come back normal, doctors often do not know what to do.
There is a false presumption regarding syndromes. After testing produces normal findings, far too many medical professionals can arrive at an “all in your head” diagnosis or that a syndrome is not life-altering. Many patients are too easily given a “get on with your life” prescription. This false narrative can become the worst enemy for someone with VSS.
When a doctor casts doubt, it then becomes far too easy, not only for the physician to discount the true impact of VSS, but also the patient’s family and friends. This can lead to isolation and depression in addition to the very real visual and non-visual symptoms of VSS. Those with VSS may then feel compelled to defend themselves and their symptoms, which is a terrible injustice.
We recognize that the medical community is always trying to help their patients, but if you are trying to help your patients with Visual Snow Syndrome, then please recognize the symptoms!
Together, we got this!