Please support Balance Awareness because vestibular issues and so-called invisible illnesses are real.
Each vestibular condition is unique. Even when symptoms are the same, the effect, intensity, duration, differs from person to person. A common element of vestibular conditions and other invisible illnesses is the unknown which can be frightening, aggravating, frustrating, and just plain ole “how, why, and I can’t” because these descriptors seem infinite.
During and following a medical examination how many times have you wanted to scream out,
- “Sure Doc, I enjoy the feeling of nausea and vomiting every few minutes that I’m lying about what I’m telling you because hip, hip, hoorah, I get to puke my guts out for another day.”
- “Doc, I know that we aren’t having an earthquake at this very moment, but I sure as heck feel like one is happening right now.”
- “No Doc, this room isn’t bright but let’s see what you say if you felt like you were staring at the Sun.”
- “Sure Doc my hearing is normal, hyperacusis is just a TV talk show topic, I’m sure that when you closed the examination room door and went out and told the nurse that you could not wait to get this neurotic problem patient out of the office so you two could play the naughty nurse together before you had to pick up your wife to attend your son’s soccer game, you wanted me to hear.” (Just making the naughty nurse part up, but most know what it’s like to be a “problem” patient).
How many times has a friend or relative told you that they just take a Tylenol, Advil, or aspirin for their migraine?
Ever hear, darlin’, sweetheart, dude, girl, little lady, boy, ma’am, sir, you just need to relax, you know chill out, because it’s only stress causing you problems?
Ok, it isn’t real, but the actual problem is that something just ain’t right because it is REAL pain and discomfort so do not doubt or diminish yourself, and seek additional medical opinions.
For some personal stories please see some of my earlier pieces including:
“Just because it might not be visible or known to someone else, an invisible or chronic illness is always apparent to someone with a condition. They are real conditions, not make believe. They are not things to be ashamed or embarrassed.
Friends, please do not feel strange asking what we are able to do or for information about our conditions. Really we want you to understand that some days are essentially normal while others are a struggle….”
“…An MD calling you a liar and still submitting bills to medical insurance for reimbursement for “treatment rendered,” friends and colleagues who only know that I “don’t look sick,” but I just don’t seem to be me are events which one cannot describe because even if you have experienced it, it is different for everyone. Even those individuals who stuck by my side can only describe the past as surreal.
It’s like standing in the middle of a room that is completely dark, without sound, and without motion. Is something really present as your senses feel, or is it only a substance within your own mind? That’s any chronic or invisible illness. From the outside looking in, you see nothing and thus reach that natural conclusion that nothing must be the reality. Even when you are the one in the room, you can’t really explain or see, but you know that something is there influencing you. That’s a reality for you. It’s not a false perception, make-believe, or fantasy. It’s real, and if only a light would pierce its way through the darkness it would illuminate what is there for all to see whether inside or outside….”
“You’re tired. You’re exhausted. You try to stay still, to close your eyes, but there is no quiet, rest, or even relaxation. You’re frustrated. You’re angry. You just don’t know at whom to direct any expressions of those feelings. You’re sad. You’re hurt. You cry but shed no tears and yet shed tears without crying. To scream or to whisper makes no difference. You really can’t tell if you are coming or going. Reality and an ongoing continuing nightmare have meshed into a single element.
Are you sick? Are you injured? The answer to either question is no. You are in this condition because someone dear to you suffers from a chronic or invisible illness….”
“…If that person knows the cause, they are in fact lucky. Not lucky for whatever is causing the negative effects, but lucky in that they have a legitimate diagnosis that so many lack. That’s not a dig or criticism at MDs and the medical community. It’s an acknowledgment of how complex the vestibular system is and that recognizing many of the root causes of various symptoms requires specialized training and knowledge. It’s tough to say, but expect to see more than one MD. Expect to have at least one MD accuse you of faking. Expect at least one MD to offer some “quick fix” that only makes the condition worse….”