5 Holiday Wishes From Someone With Meniere’s Disease
The holiday season can be a difficult time for anyone, and finding the perfect gift for those you love can be almost impossible.
So to make it easier for you, here are some ideas from someone with an “unseen” illness. None of it will cost you a dime, and the results can be profound.
I have Meniere’s disease (I know – I hadn’t heard of it either), but I think these apply to any of us struggling daily with something you can’t outwardly see.
So without further ado – here are five wishes from someone with an “unseen” illness.
Please understand when I have to cancel at the last minute. I promise I don’t use my disease as an excuse – but unless you’d like vomiting and my head glued to your (hopefully) bathroom floor for several hours – you’ll have to trust that I know my limitations. Whether it’s physical sickness or anxiety that causes us to behave in a way we’d rather not, trust that we’d rather be there than dealing with this.
2. Stop giving us a hard time about our conditions.
I know we all use humor as a coping mechanism, and understanding an unseen disease is difficult – but please try. It’s not funny when someone with narcolepsy nods off. It’s not funny when someone with Meniere’s wobbles when standing or can’t hear you on one side of their head. It’s not funny when someone with “high-functioning” anxiety suddenly feels as though they can’t breathe for no reason in the canned foods section of the store.
Yes, we know it looks and seems ridiculous. Yes, we can take a joke. Yes, we can occasionally pick on ourselves for these aspects of our diagnoses or laugh with you. But when it’s constant – it gets old. As much as you may be tired of seeing/hearing about/dealing with the result of our condition and think laughing it off makes it easier, we’re 10,000 times more tired of experiencing it and feeling like the butt of everyone’s joke. This leads to…
3. Please take our diseases seriously and (heaven forbid) take a few minutes to learn about them.
Don’t ask, “How’s the ear thing?” or “Still dealing with that panic stuff?” Belittling it doesn’t make it any less real. We’ve all been guilty of this. If you haven’t experienced it and can’t see it – it’s easier to blow it off than to realize it has very real and has a daily impact on our lives.
We’re usually trying our best not to let it bleed over to you – just because we’re doing a damn fine job of coping (thank you very much) doesn’t mean it’s easy. Respect that we care enough to shield you from as much as we can, and reciprocate with some intelligent questions and thoughtful conversation. That means so much.
In general, as a human, figure it out. It’s not that hard.
In specific, don’t get pissy when we politely decline your food or ask what it’s marinated in – (unless you’d like me to ruin your newly redecorated powder room – see above). No, I can’t and won’t drink your cocktail. Yes, alcohol content matters, sodium content matters. So does sleep. Someone might need a few minutes of recovery from a party in a quiet room or on the patio. Don’t chase them down and pressure them to come reassure everyone else they’re fine. They’re not right now. But they might be if you can be gracious for a few minutes and give them space to breathe.
Further – it sucks. I want to drink that cocktail – oh so very much! I want to eat that gorgeous hunk of salami. The guy taking a breather on the patio wants to be in the midst of all the shenanigans. But the price is simply too high. And I’m not asking you to provide me with a special meal. I’ll eat what I can, and have faith, I almost always have a snack handy that I can munch on so we all have a lovely time! The person taking the break on the patio will come back when they can with a better attitude, or they may politely excuse themselves from the gathering because it’s all too much – but trust us that we’re doing what works out best for all. I’ll go ahead and mention that this works as a general rule for all – you never know what someone is coping with – so give some grace and everyone is better for it.
If you love us, love us as we are right this moment. (Again – good general tip for life, don’t ya think?) This might get better or easier. It might not. I have to shoulder this load. I wasn’t given a choice. No one said, “Hey Sara – would you rather have Meniere’s or break your right arm twice?” You absolutely don’t have to walk this road with me. But if you choose to, do it with kindness and love. I don’t just need a kick in the ass to get over it. I don’t need your tough love. It doesn’t work here. Just love me, care for me, cherish me, and I promise to do the same in return.
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Thinkstock photo by petrenkod