Chiari Online Support Group

Ignorant Person

#1

I’m in high school and I wear sun glasses to school because the fluorescent lights make my migraines a lot worse than they can be. Now don’t get me wrong, I’ve been wearing these for about a month now and I’m used to the occasional questions of why I wear them, to which I simply answer with, “Migraines.” Because i don’t want to get into that much yet, as I’m new to the diagnosis. Those people understand though and don’t pry. I don’t mind questions, or even if I hear people just contemplating them in the hall, that’s perfectly fine, I’m a chill person,

But recently there is this girl who had no respect and is very inconsiderate, not just to me but my friends as well. I over heard her say, “Why is she wearing those? It’s not even that bright inside.” And while that may not sound bad, the way she said it was very snobby, and she wasn’t even trying to hide it. She said it at the volume in which she knew I would hear.

It just bothers me that someone can have just disregard for reasoning, of course I have a reason to wear these lol, just because you can’t see my illness doesn’t mean it’s not there.

I honestly don’t understand how she can’t think for a second on how I may be ill or something. She can’t be that clueless right?

This was just a rant I needed to get off my chest. It’s been bothering me, by how ignorant this high school girl is. So that’s all I guess :woman_shrugging:t3::woman_facepalming:t3:

#2

Hey Kayla,
Insensitivity is common, real common, But then add in high school WOW that can be the most insensitive environment on the planet. You could explain until you are blue in the face, it will only give others more ammunition.
For people with rare conditions that insensitivity can be a daily thing that we have to manage and over time, some of us, learn to ignore it. Those people who like to judge have never had to deal with a condition such as yours and probably never will, but if you can learn to block it out and move on, you will be a better person for it.

Merl from the Moderator Support Team

#3

Additional thought for you – instead of regular sunglasses get yourself a pair of amber/yellow/raspberry tinted glasses (you can get amber and yellow ones at the dollar store to test them out). These actually work better for the glare of lighting.

And, they won’t look like “regular” sunglasses so it might clue in a few people that something else is going on with you.

azurelle

#4

I am so sorry someone is busting ur chops over sunglasses. I had decompression surgery in 2014 and still have permanent nerve damage. I am 42 so i am old, lol. But, like i can relate because I would wear sunglasses at work because of the same reasons as you and my HR dept told me i was being unprofessional and needed to stop it. That just happened last year so I can relate to you. Its like others have NO CLUE what we deal with each day. The slightest thing can trigger an episode.

I had an awful day today and was gonna post for some support but I saw ur post and wanted to reach out. No magic words, other than I can relate to ur situation and I hope that helps you some? Keep mentally strong as best you can, its the only hope we have at living a normal life.

I wish you well

#5

Thank you for the advice <3
And yeah people are sooo insensitive

#6

I wish I could get more normal looking sunglasses, but I have regular glasses and they need clip on sunglasses or else regular ones will fall off :((

#7

I hope your day got better, and thank you for the story. It’s nice to know someone else can relate! <3

#8

You got it sublime!!! I read ur post and immediately felt we have similar sufferings. It can really really weigh you down when others judge cuz they have no clue. The simple fact the my human resources dept told me i was being unprofessional wearing sunglasses…when I was trying to avoid the pending headaches and blurry vision. I tried to explain, to no avail

I hope things pick up for you as well :slight_smile: As a Chiari sufferer we know its an hourly battle with random symptoms coming whenever they feel like it. Hope ur school situation improves :slight_smile:

#9

Rightly or wrongly… what you might not want to hear…

From a medical person’s point of view, those who wear sunglasses in-doors or other culturally deemed inappropriate places are slotted into a category. Terms such as imbalanced, attention seeking, and malingering can be marked on a chart. The layperson consciously or unconsciously does the same thing.

I very much liked the suggestion of seeking out optometrist recommended lens. They (not all) have more experience to suggest the best product for you. Perhaps there is a coating that can be placed on existing lens or simply purchase a separate set for such occasions - without making an obvious deal of switching out. It is apparent then that the lens serve a function or are simply a preference for improved vision.

Chiari is indeed an invisible condition. However, it is not within our power to make other people understand our difficulties. Address and manage symptom control and you are ahead of the game!

Good luck!

#10

Hi, I have to wear dark prescription glasses all the time. I would suggest that when you next go to get your eyes checked, ask the optician if it would be possible to have a second pair of prescription glasses with a tint, you will then be able to choose the colour of the tint and the depth of the tint too. It would look much better than wearing clip ons over your normal glasses and might also give you a bit more confidence to deal with people that are less than pleasant. I would try to ignore that girl at school, I hope things look up for you.

#11

Thank you <3

#12

I’m planning on hopefully going through with surgery pretty soon, so I would rather not go and get special sunglasses for when I’ll only wear them not that long. I’m hoping the surgery would take away my sensitivity to lights. My schools administration knows of my condition and my doctors said it was fine for me to wear the sunglasses as needed. I even take them off some times of the day, because I can go a little bit without them, but not long. But thank you, if I would be wearing them longer I would totally go and see a specialist in this. Thanks!

#13

I have transition glasses, but they only work in the sunlight for me, unfortunately. I also plan on getting surgery as soon as possible (within the next couple of months) so it can deplete my sensitivity to light. If I knew it would take longer to go in to my specialist, I would totally talk to my optitician about that. Thanks!

#14

Some how through life we seem to run into lame people that judge before they think and some even get empowered treating people poorly. I have always heard rise above your circumstances and be the better person, which is wise and so not easy to do when you experience rude behavior from another person.

Your focus belongs on you though and not her. You may still need to have protection for your eyes even post-op. Having been in the optical manufacturing field in prior years I do know that certain tints can help lessen light aggravation and a good eye doctor and then a good optician and manufacturer will know what I mean; yes sunglasses help, but so can other lens tints.

I applaud you for venting I would not know what to do without the friends I have in my life. Stay in touch with this Website and share with us your journey with Chiari.

#15

thank you :heavy_heart_exclamation: