What Do You Say to People?

My MAV started during my last semester of college. I missed at least two full weeks of classes, had to take valium to just go to class, and basically spent the rest of my time in my room at the apartment. I managed to graduate, but getting a job was out of the question. Sometimes it took all my effort just to go to the grocery store, and even that would leave me exhausted for hours. Nearly every day was bad, really bad. Didn’t help that my thyroid was going crazy at the same time. This went on for at least 3 years.

A new friend of mine recently asked me what I did prior to becoming a stay at home mom (at least being a SAHM now, most people don’t ask about job stuff anymore). I mumbled something about being really sick and not being able to work, but that I did do some temp work (true, but left out the part that the temp work was very very short-lived). I guess what I’m asking is, how do I possibly explain to others about MAV? About how it practically ruined my early 20’s, destroying me physically, emotionally, psychologically. The dozens of symptoms, the fatigue, the nightmare of being trapped in a body that has vertigo 24/7. I already feel so robbed, that I didn’t get to start a career, but I feel like such a hack when I tell people I didn’t work. Saying something about being dizzy, or migraine…I don’t think anyone would get it. Heck, the only person in my life who comes close to understanding it is my husband, but even he can only understand so much. So how you do explain it?

its very hard when people dont really “get” whats wrong…& when you mention migraine, well, its like they think…“its JUST a migraine”! :x

i use to say i had an inner ear dis-order b/c i always thought i had Menieres…until just recently diagnoised with MAV. I dont really get into “detail” with anyone except hubby. i am lucky i never had to hold down a job b/c i dont think i could have done it.

when my in-laws ask me how im doing…i just say i have good & bad days & its all migraine related.

I was off work for almost 6 months due to severe migraine. When I would mention this to people they would get that “just for a headache?” look. I would then explain that most people don’t realize that migraine just isnt a headache - it’s a neurological disease that encompasses a lot more than headache and I go on to explain what those are. Most look at me stunned - didnt realize that there was more to it. Whether they still “got it” or not I dont know, but I enjoyed informing them!!

Telling people I am having inner ear issues causing vertigo, most people can relate, there is no way to explain all the things that are going on with me.

Thats the one I use everywhere. I have an inner ear problem which makes me dizzy. People relate to that quickly, saves a lot of explaining.


I tend to use the inner ear causing dizziness - as soon as you mention migraine people think you’re pulling a fast one! I even had the work occupational health say to me " is that all" when I had the diagnosis off the neuro of chronic migraine and migraine associated dizziness - can’t tell you how good that made me feel! :lol:

Inner ear/neurological disorder is a good idea, thanks! As many of you mentioned, saying I have migraine doesn’t exactly convey the severity of what I’ve been through.

I say, “Vestibular migraine, not the headache type.” If people ask further, I mention that I couldn’t walk straight for half a block for maybe a year when this first hit, so I follow the treatment plan pretty carefully. That gives them some perspective on it.

I say, “I have an inner ear problem that was originally a bacteria or virus issue, but it created some long-term balance issues.”

The minute you get into migraines, MAV, and so forth, people either start to tune out, or they suspect you are a hypochondriac or malingerer.