Tamar Schwartz

My vestibular disorder, Migraine Associated Vertigo, is also sometimes called Vertiginous Migraines.  When people think of migraines, they think of someone in pain, and that part is true.  But migraines, which vary in severity, can also cause vertigo or disequilibrium, which is why I don’t like to just say I have a migraine condition.  The term vestibular disorder is broad, because MAV is only one of many vestibular disorders, but more accurate since vestibular (which refers to the inner ear) means my equilibrium is affected.  It’s still not a perfect term, since balance is really a whole system, not solely dependent on the inner ear.  But the words vestibular disorder are definitely an improvement.  There are many names of disorders and conditions that are now commonly used and familiar, and I want vestibular disorder to be like that.  There are situations when it’s appropriate and necessary to tell someone I have a vestibular disorder, and I don’t want it to seem like I’m speaking in a foreign language.

I believe people are often afraid of being judged or stigmatized if they tell someone their medical problem.  That those with disorders will be treated differently, as if they’ve somehow BECOME their disorder.  No one IS their disorder, regardless of the problem.   You are still a person with a personality.  Using the phrase “I have health issues” is not, in my opinion, an improvement.  To me, this is a polite phrase that people use, often when they are worried about saying what is really going on, or because they don’t think they will be understood. There are so many people living with problems no one can see, and people don’t think about that often enough, instead judging others, presuming they know everything they need to know about a situation or person. I feel very strongly that people need to stop and think, realize there often is more to the story than meets the eye, and treat each other with compassion and understanding.   Someone might see me at an event, and not have the slightest idea that anything is wrong.  In fact, I need to get my bearings regarding the size of the room, the number of people, the noise level, the lighting, etc.  I’m fortunate that the congregation I belong to is a wonderful, supportive community.  Even so, no one really understands what it’s like for me on a day to day basis living with vestibular and vision disorders.  So my writing gives glimpses or snapshots of my experiences. Those snapshots are important windows into my life, as I live with invisible disorders.

Sharing my experiences can be difficult, or make me uncomfortable, but that’s not a bad thing.  Sharing my writing makes my medical challenges more real to me because I look at and think about my situation in a different way. This process, and helping others with invisible disorders, is all good.  I don’t personally believe that my vision or vestibular disorders happened for a reason, or were meant to be.  I DO believe that learning and growing from whatever I have to deal with is really important, and a much better expenditure of my energy than anger or self-pity. To say that what I’ve been going through, and working with hasn’t changed me, had an impact on me and my life would be ridiculous.  Of course it has, some good and some bad.  But it’s still NOT who I am, not my identity.