Thursday, July 3, 2014

The Harsh Truth

So, I decided to start using my blog to be the bridge between spoonies and healthy people recently, and honestly, I had no clue what I've gotten myself into! But I ask all of yall to bare with me. Like I've said in my other post, my blog deals with what I see in my life. It could be completely different for you and in some cases, I hope so. This is not made to attack others but merely open the eyes of one another. It's the bridge between healthy people and spoonies. Neither is greater nor lesser, each side has things they do right and wrong from my perspective. I do use other spoonies input and plan on using healthy people's in future post as well. And unfortunately when it comes to spoonies there's a lot of misunderstanding and isolation.

Photo Credit: Unknown (Pinterest)

So sit tight and hear me out, hopefully this helps to better understand each other and ourselves. Which will then allow us to become more aware of how our actions are received and also how we can help each other .
In this article "We" = spoonies, "You" = healthy people

I was writing what was going to be my focus article for this month which was going to be about how to talk to a spoonie. But then I realized, there's really no correct or incorrect way because there is always the other side of the coin and when it comes down to it, if someone is genuinely trying to make conversation/friendship that makes us happy.

When it comes to spoonies we say so many things such as:
"My illness(es) doesn't defy me"
"I'm not a warrior I'm just dealing with what I was given"
"Don't assume, ask me"
"Don't ask me how I feel"
"We're still the same person"

Now this is where my spoonies need to hang in there. Because this is where I'll probably lose you.

The thing is our illness DOES defy us. Majority of the time we have to change the way we live our life so that we can still be alive. One day we were perfectly fine and the next we're confined by our bodies to bed. All the old trophies from cheerleading, softball, basketball, academics, etc. prove that our life isn't what it use to be and that's okay. But our illness(es) has affected us which then influence how we may act, speak, or think, therefore defies us. For example: I have mainly GI (digestive) issues. People ask if it affects how I eat. It doesn't feel like it has because I've become accustomed to the restrictions my stomach has, I dont even need to think twice before ordering food. That was a different story when I first started to have symptoms.

Photo credit goes to: Scarlett in Disguse

And when it comes to strength, we are a warrior/strong person. We could have just said nope, not doing this anymore and become negative all the time or God forbid, kill ourselves. But did we? No, we're still alive and kicking, we may get knocked down but we get back up. That was still a choice we made. Yes it's not like playing Call of Duty where we have a weapons and attack the bad guys. But there's a big difference between being stuck in bed because we don't feel good and just staying in bed because we give up.
You, my fellow spoonie, may feel weak and others may treat you as such but that's far from true. The fact that you're still here shows you're the strongest kind out there. Our bodies not only does basic functions but a combo of either attacking itself and/or trying to heal itself. Sure it may look like the person who is up and going, always busy and so much more is stronger than us, but the fact that our body still functions despite all the crap it's going through shows strength.

We so often tell others not to judge us but we ALSO judge them. We assume we're a bother if we text, call, message someone or that they're busy. We assume that they don't want to talk to us. We assume that their life is so awesome just cuz they're not stuck at home or in a hospital when they could be going through a different kind of living hell. After all, my spoonies, just like our invisible illness(es), we can hide our emotional pain, and so can healthy people, they are fighting a battle of their own too. So spoonies, I ask you to keep this in our foggy brains and time to time realize when we do make assumption. 

Photo credit: Unknown (thanks Pinterest)

When I asked for other spoonies input "Don't ask me how I feel" was said a lot. I get it, it's such a complicated answer but, if someone decided to talk to us out of the blue, asking how we feel is the EASIEST way to get a conversation started. So let's give them some credit, at least they're making an effort. Besides, just cuz they asked how are we feeling doesn't me we HAVE to tell them the truth or go in detail. We can say we're "hanging in there" or "could be better" and if we want to be honest, we can even say "I feel decent today" or "I feel like death." We don't have to focus on how we feel physically even, you can express how you feel emotionally. They mean well when they ask how we're feeling and most the time they're concern for us.(But all you healthy folks let's maybe go for a "how are you doing?")

And kinda relating to my first point, when we stress that "we're still the same person" sorry yall, we're not. Yes, you still have the same passions, likes and dislikes you've always had and always will but, throughout the years you became that strong warrior we also talked about earlier. In your healthy life you were an athlete, musician, or AP student but for the majority of us because of the pain, meds, and so much more we normally end up "retiring" We pick up new hobbies, like, and dislikes being stuck in bed or at the house.
One time I was hospitalized I met this girl who survived a traumatic accident, her parents were told when they arrived to the hospital that she wasn't going to live. She ended up surviving and is alive to this day. But something happened, her personality changed.
Sure, in her case it could have been all the trauma to her body, but with us, it was all those needles, nurses, medicines, and hospital stay. It was those long nights in agonizing pain wondering if we'll survive tomorrow and when will we get a diagnosis. It was those asshole doctors who thought we we're just mental and wanted drugs or attention. We had to deal with that and so much more. You may not notice the difference but the people around you did. Now, this change could have been minor or it could have been major, but just like everything else, the "side effect" varies person to person.
Personally, I've become more bluntly honest. I am more sharp and have lost some patience. It's not like I wanted to, it just kind of happened. 

So what about healthy people? Where are you in this web of multiple sides?
Well for starters, when we run into you and you say things like, "I miss you! We should hang out sometime!" and then you never make the effort.. that hurts. Especially when we're first going through all this or if you're a person who we had a close relationship with. And I know, you say that to everyone so we shouldn't be butt hurt but we already feel isolated and unwanted. So when someone says something like that we perk up like a dog being asked if they want to play outside.

And when you tell us that your friend's other best friend's mother has our illness assumptions are made and advice is given. Sure you're trying to help out and suggest things, but that's like us saying that test you're cramming for our brother's roommate took and when he studied for his test  he was upside down and aced it. We so often get unwanted input and for the most part, let it in one ear and out the other but when it happens to you it becomes a problem. Different people respond to different situations, including body wise which includes symptoms and treatment. So maybe instead of right off the bat giving us advice let us know that you know someone with our condition and let us decide if we want your or their input.

Something else that is high on the list, "I'm here for you if you need me" what makes it even worst, "It doesn't matter what time of day you call/text/message me!"
Again, this is something people throw around when they're trying to be helpful. The truth is, the time we need someone tends to be whenever it's dark out or right in the middle of the day. So you honestly have to think before you say something like this. How busy is your life really? Are you a deep sleeper or light sleeper? Are you just saying this because you don't know what to say?
Answering these questions can help you truly figure out if you can "live up" to what you say. And don't feel bad if you can't honestly say that. We spoonies understand that yall have crazy lives and we're okay with that. If you're just saying that because you have no idea what to say tell us! One thing spoonies crave is truth and honesty. We realize most people have never been in our situation so we don't expect you to be a pro at this.

Photo credit: Unknown (Pinterest)

Healthy people also claim to understand what we're going through. But we're not going to go in detail of that right now. Right now, we're focusing on hypocrisy and in this case, it happens when we're an inconvenience. We do our whole "hanging out speech" to you about our pain and energy levels, you respond by saying you understand. But if we bail last minute or even in advance you look down on us. Sometimes you get mad and complain how much of an inconvenience it is for you. We're not in control of how our bodies behave. Trust us, if we could we would. We hate having to cancel plans, we want a life outside of medical buildings and our house!

Kind of relating to that last point, when we do push through whatever plans we have, you tell us "do what you need to do" and when we take that step, we get the same reaction as if we cancelled plans. Frankly, it's already embarrassing enough having people stare at us for freezing right  in the middle of a crowd as we turning paler than a ghost. But if you're acting like you don't know us, freak out excessively, etc. It doesn't help the situation. No, we don't expect you to be as cool as a cucumber but freaking out like we're holding a grenade doesn't help us at all. (hahah yes! That was a "The Fault in Our Stars" reference.) We get it, you're frustrated, so are we, and in the moment, it's hard for both sides to control our feelings. But maybe now that you're aware we can help each other through this situation.

So that's all I have for right now. What do yall think? Is there a situation I missed? I really want yalls feedback! I truly hope this post helps both sides see the errors in our way. I for one did and will strive to overcome that. Again, this post isn't made to point the finger at one side or another, it's made to help make relationships better between healthy people and spoonies.
Also, if you have any advice regarding my blog or writing please feel free to tell me! I'm currently diving in on how to make my blog successful and user friendly. If you have any suggestions on what I should do, topics I should cover, anything please let me know!

Till next time,

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