As people living with Meniere’s, we’ve all adjusted, or are trying to adjust, to the myriad of physical symptoms we share. The symptoms that are our constant traveling companions…tinnitus, ear fullness/pain, disequilibrium (my “dizzy hum” I call it) …all the way to the nausea, loss of hearing, and vertigo.

However, there are those other “added bonus” feelings that plague us. Fear of making plans and commitments. Guilt when we have to cancel. The self-consciousness of being that customer when ordering at a restaurant…and hoping against hope the chef really does adhere to our request. And, the biggy, that nagging, gnawing sense that we are a burden to our friends and family. 

And that people don’t believe us.  “You were fine…” ten minutes ago, yesterday, last month, last year. Pick one! And this week, for the first time since my diagnosis, I was labeled a “flake.”

Yep. Long story short, I was left off a text regarding specifics of a social gathering. A social gathering, I attend nearly every month. I was left off, apparently, because “you’ve flaked the last few times and I didn’t think you were interested.” What?  True, I missed the Christmas party last month because I was in bed, spinning, with a vertigo attack. Otherwise, her assumption was completely unfounded.  As a matter of fact, I had attended previous months when the texter in question had not, so she wouldn’t have even known I was, in fact, NOT flaking, but in attendance.

This all coming from, not a close friend, yet someone I at least believed understood my occasional difficulties. You know, I thought she understood that (literally) dizzy, unpredictable, brain-foggy friend and coworker we vesties can be at times.

I was shocked, hurt, and confused. So, I went into damage control…I attempted to explain and defend myself. Well, that made things worse. Of the ten people on the text string, only two responded to me privately with compassion, support, and understanding. (One of whom, I might add, lives with invisible struggles herself, so she gets it.)  On the flip side of that, one even responded, not privately, but in the group, quite harshly and confrontationally.  What the hell?

Didn't hear from the other seven...crickets.

I stewed, I cried, I wallowed a bit. And of course, I did not attend aforementioned social gathering. Once I put the Kleenexes away and put on my big girl pants, I realized, I don’t have to defend and explain. I do my best to maintain my social life.  I always extend the social courtesy of an RSVP, express gratitude for an invitation, and I graciously bow out if need be. That’s all we really owe people, isn’t it? Courtesy, gratitude, kindness, and respect. Shouldn’t we expect the same in return? The last thing we need, when feeling guilty and sad about missing out, is a heaping, steaming pile of skepticism and accusation…whether stated or implied.

So this week, I've been taking an inventory.  I've spent some time recognizing all of those people in my life who are always there. You know, our “ride or die” circle. The ones who check on us when we don’t show. The ones who understand if we suddenly have to leave, and even offer to drive us home.  The ones who patiently wait with you at the rest-stop, as your meds kick in, so you can continue on your road trip.  The one’s who help us stay on track with our healthy, symptom-managing goals, “are you sure that dessert won’t throw you off later?”. The ones who thoughtfully prepare meals with our dietary restrictions in mind. The ones who sit for hours on the bathroom floor with us until we’re ready to move to the bed or chair. Those are our people. 

Those are the people that don’t need us to explain. They don’t need us to fit in to their plan. They are gifts we’ve been given to walk beside us on this adventure of life, the good, the bad, and the ugly.  They occasionally step in and hold us up when we can’t quite take the steps ourselves. Thank God!

We treasure those people. And every day, my hope and prayer is that I am reflecting their love, compassion and understanding back to them and to others. Those are the people that truly matter to us, aren't they?  And we matter to them, they see us, who we truly are, despite our struggles.  And we all know life gets a little messy sometimes.

So yeah, okay, I guess I can be perceived as a flake at times. But I sure know I'm not a fake. Meniere's is real and we live with it every day.

We can educate the people around us, yes, absolutely. But we shouldn't have to feel "less than" and defend ourselves. We do not have to be made to feel like we must make excuses for our disorder. We do not have to fit someone else’s idea, their perfect picture, of how we’re supposed to be. And that’s true for anyone, Meniere’s or not. We’re all doing our best. If someone chooses not to see that in you, to believe you…they’re not your people. 

With love and in balance,