Refuse to be invisible…

Meniere’s Disease is one of the many invisible illnesses. I look like a typical 25 year old most of the time. When I am around strangers, walking around Target or the grocery store, I am ok with everyone thinking I am normal. It gets more difficult when you are around people you love and they say things like, “You look great” or “You just look like you are feeling better”. The PR thing to do is say “oh gee thanks, I feel fantastic” – basically to lie through your damn teeth. What you really want to say is, “Oh yes, falling in the shower this morning was the bright spot of the day, I am hiding the bruises on my knees under my pants, waking up this morning and literally falling off the floor was just grand, and questioning my very existence each and every moment of today has been a joy.” 

So I am proposing something – let’s STOP being invisible. Instead of just giving some pithy response to our loved ones, let’s take the opportunity to educate. We don’t have to be rude or condescending, just be HONEST.

Let’s bring Meniere’s Disease out of the shadows. Let’s wear it like a badge – make people understand it. Let’s stop lying to protect our loved ones. Does it really protect them? It just hurts us in the end when they don’t understand it. LET’S REFUSE TO BE INVISIBLE! 

5 thoughts on “Refuse to be invisible…

  1. I do refuse to be invisible. But I’ve also gotten to the point where my illness is not that invisible. I use a walker a lot of the time. Always when I’m out of the house. I often have to grab something when I stand. I will be just chatting and suddenly I will be lying down telling my husband “I need pills” and praying I won’t throw up in front of others. (that’s not to hide from them, it’s because I do not feel safe around anyone but my husband when I’m having vertigo)

    I’ve also lost my hearing, so I have 2 cochlear implants. I don’t try to hide them, I try to show them off as much as possible. “Hey, look, I have trouble hearing!!”

    so, yes, I refuse to be invisible, or to act like nothing is wrong. That doesn’t mean I don’t put on a happy face sometimes for others, because it makes me feel better too, I like having a “normal” type of a day sometimes. I also try hard not to let my niece and nephew see me to ill. They know I can’t hear, and are so great about it. (1 is 6 and the other is 2). Kids are often more understanding than adults. Also, I know they will always take this knowledge with them. They will always know how to talk to a person who has hearing difficulties. They will know when a person can’t do something because they don’t feel good, that it is OK. You respect it and still love them.
    I wish more children understood these things, so that once they grow up they will make a more understanding group of people.

    (on a side note. I often get a bunch of post from you all at one time. My Inbox is full of just your post announcements right now. : ) Even if you post a lot at once could you schedule them to come out like once a day for a while instead of all on one day? That would be great, and I will have a much easier time reading your posts. And I love reading your posts!
    w

      1. Sure, Where you hit Publish, the box right above that there is a place that says “Publish Immediately” and there is a little “Edit” beside it, just hit that and a calendar will come up and you can schedule your posts to come out on any day you want.

        Hope that helps.
        When I participate in the Health Activist Writers Month Challenge…or something like that, it’s through WEGO health, you are challenged to write a post every day – they give you a list of prompts. That’s how I do it. I can’t post every day, so I will write when I can and schedule other posts to come out on other days.

        I love your little signs! All of them!!

      2. You know, I don’t remember how I initially got into it. But go to WEGO Health’s site…just google it and it will come up. Join their site and they will send you stuff about being a health advocate. Then when the list of prompts comes out you should get it.
        They also have a Facebook page, and Twitter, and Pinterest…heck I don’t know what all. I mainly just do the writers things. They asked me to be in a round table discussion once, but it was on the phone and I can’t talk on the phone…so nope, not for me.
        It’s tough there for me because there isn’t really support for our illness, it’s too rare.
        i was a finalist in the WEGO Health Activist Awards one year….the award was “Too Much Information”, it was given to the blog that wasn’t afraid to go there, to give up all modesty to tell all the ugly parts of their disease. The no longer have that category, but I was thrilled to be nominated, and then to be a finalist. : )
        I stopped blogging as much for a while, but I’m back at it again. So hopefully, it does some good. If one person reads it and knows they aren’t alone, then it’s worth it.

        if you ever want to email me feel free. apicnicwithants@gmail.com
        hugs to you
        wendy

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