Since I have been diagnosed with SCDS I find that I spend lots of time on the Internet looking for answers. There is an overwhelming need to find reasons for my symptoms or at least other people who can tell me it’s normal to have them. At this time there are only a couple of website that accurately explain SCDS and most of them are medical articles that stick to the cold hard facts.
Enter the world of the online support group. While the medical articles talk about the facts of the condition, those of us who have it long for the human side of dealing with it. The group I have found is marvelous in this way. I can write questions like, “Can anyone else hear a sound like sandpaper when they move their eyes?” and in less than an hour I will have enthusiastic responses by other people around the world, who indeed, hear the sandpaper with the eye movement and are glad I hear it too! “Does anyone else get dizzier when it’s stormy?” “Yes!” “Has anyone else noticed there are two different type of tinnitus in their SCDS ear?” “Yes!” The questions and confirmations and words of empathy go on and on.
Over and over, we all share symptoms and support the validity of others’ symptoms. What is it about human nature that makes us find this reassuring? Is it that misery loves company? Or is that we all crave empathy. We are all trapped in these bodies that are off kilter and we need to be reminded that we are something apart from our symptoms. We all know and remember our lives before SCDS hit us. And we together, virtually, across the world, can relate that it’s just a tiny pin-sized hole in our inner ear that has changed our worlds and afflicted us with symptoms that no one else can understand.