What don’t you understand?

Fibromyalgia is an invisible illness, meaning people don’t understand. At least that’s my definition for it. You look great- thanks. You did well on your test- thanks. You’re feeling better, right? – no.

When I close my eyes, sometimes I can pretend that I’m completely okay. It’s nice. 

 

But my eyes are usually open. You see, I understand that people look at me and see a normal girl. They see my test scores (which I work my butt off for) and see a normal girl. They watch me talk to teachers and other students, and see (you guessed it) a normal girl. This wouldn’t be a problem, because most girls want to be/seem normal. But I’m not. I will always have to sit out on many a joyful occasion because my health issues seem to prohibit fun. I will always have to plan out my days in advance, because dare I push myself one tiny step too far, I will have to pay for it with intense pain and exhaustion. I will always have to be the one who can’t participate, the one who can’t help, the one who’s sick.

 

You see, to me, all of those things have become so obvious. Of course, that’s how it is when you have Fibromyalgia. But it’s an invisible illness, and people don’t see it. And what they don’t see, they don’t understand.

 

In some ways, it’s nice that people don’t know the moment they meet me that I’m sick. I get to escape, or maybe avoid the subject when I meet someone new. But in many ways, it really sucks. It makes it all the more awkward to have to explain.

 

For instance….

I’m talking to a bunch of people, and they realize there’s a trampoline nearby. Let’s go jump, they say! Off everyone rushes, towards the fun galore of jumping. I sit down on a chair. Someone asks me why I’m not joining, and I, innocently assuming time and time again that I can just explain, tell them that I have some health issues, Fibromyalgia to be exact, and jumping just doesn’t do it for me anymore.

 

Then the whole scene ensues, of them pretending to care and understand, asking me to explain what it is, what it means, how I’m managing. I come out of every scene, back to my wardrobe change, feeling like maybe this time someone really did understand. But there’s always that twinge.

 

That night, I have a nightmare that involves trampolines. A week later, I see that person, the one who cared and understood, and they don’t remember who I am. I tell them, we talked when everyone was on the trampoline. They now recognize me. They ask me, so how’s that thing you have? It was the flu, right? So I just give up, and say that yes, indeed, it was the flu. They tell me they are glad to see I’m feeling better. I thank them. And the twinge turns to full blown feelings of… feelings of…. I’m not sure I can describe them. But they suck.

 

What don’t you understand, people? Health issues = physical implications = emotional and mental implications = difficulty leading a regular life = it would nice to have someone care.

 

But you know what? Maybe it’s not even that. There are some people in my life, that I know care about me. Maybe they just don’t know how to show it. And I know I get angry sometimes, when people do the wrong thing. But how can I not? And I’m trying, really trying, to keep those angry spouts in check. But when a specific few things are said to me, I have a really hard time with that. These are those few:

 

1. If only you pray harder…

My response: Prayers can’t fix everything. I’m working hard to fix this, and I have to put some faith in that as well.

2. Oh my god, you’re so lucky!! You get to stay in bed and don’t have to go to gym!

My response: Wanna trade?

3. But you just look so good!!

My response: Thanks! But, um… I still feel exactly the same.

4. It’s all in your head.

My response: I have something I can put in your head. Like this axe, perhaps.

5. Your illness is just caused by stress.

My response: Stop being an imbecile and do your research! No it’s not!

Okay, so maybe these are a little extreme.

Maybe this entire post is a little extreme. I understand why people don’t understand: it’s an invisible illness. I get it. I know that people are trying to show me they care. I know that people don’t know what to say, and are just trying to make me happy. I know.

 

I just wish, that sometimes, they’ll also get it right. I dream about it all the time. About someone coming, who just really understands me, and what I’m going through. I know that that someone doesn’t exist. I know that every person in this world feels misunderstood, and that no one will ever know what it’s like to be me, because I’m the only one that is.

 

But a girl can dream, right?

 

And that’s what the next post will be about.

Stay tuned.

Be kind to one another, and take more notice of what people around you are going through. Then remember what they tell you. You don’t know what a difference it could make.

 

Yours truly,

Ella

 

Feel free to comment below, and ask any questions you have. I may have come off a little strong today, but I assure you, I don’t bite (or swing axes).

 

Song quote: “If you close your eyes, does it almost feel like nothing’s changed at all?” -Pompeii, Bastille

 

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9 comments on “What don’t you understand?

  1. I’m with you. Having a (mostly) invisible illness can be really annoying, especially when peope say that as a young person one should be able to keep night watches, be very actice all the time, concentrate, yada yada … (I’m stuck with a pretty common autoimmune desease which can be kept at bay very well with a proper dose of hormonal substitutes etc, but it puts me at risk for other syndromes, among them fibromyalgia)
    Thanks so much for sharing your insights, keep your head up!!

    Like

  2. ququ1337 says:

    Your writing is pure.

    Like

  3. Amy Lapetina says:

    I am so happy now to be reading your blog. I write in my blog about “invisible illness”. It is nice to know that there are others who experience the same feelings. Sometimes it is so difficult to be optimistic about life. I’m glad you are writing and sharing your feelings with others as it really helps to know that you aren’t alone.

    Like

  4. I *love* #4 and #5 especially…all in my head…and yes, must be stress… The “Just don’t think about it” advice is the best above all though, that can really piss me off. I wish people just understood invisible chronic pain… Just because I look ‘normal’ at first glance it doesn’t mean that I feel well at all..

    Like

  5. rolandlaufer says:

    I am deeply moved my you blog, and I share your pain, and the feeling of not been seen as the person You are. I share your sentiments even though my hidden me, which is hardly seen by my encounters is not created or influenced by illness but by my soul and heart.

    Like

  6. nmbrsrgr8 says:

    I loved your question/response section. I so wish I had to guts to respond that way at times. I look forward to reading you blog!

    Like

  7. mnunez5446 says:

    Wow, thanks for sharing this. I know all too well that just because you can’t see the pain it doesn’t mean it doesn’t hurt.

    Like

  8. I would rather people say what they say, like ” you look fine” than not say it, which is actually more the norm. I can just tell they think I am making it all up for some reason. Seriously, I would rather do housework than feel like this!

    Like

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