On my personal facebook I don't post as much about my health because 1. I have a facebook page about my health, 2. I'm trying to keep my personal facebook to be less about my health and more about me.
Obviously that's kinda difficult since being a spoonie/chronically ill/invisible illness affects pretty much every aspect of your life so occasionally, I'll post something health related. Such as "i'm so tired this is frustrating", "ugh I had plans today but my pain is too strong to go" etc. Well, last night I posted something from instagram by Mrs. Welches Warriors and boy did it strike some conversation! I like many spoonies don't really care about what you say about me. But I'm my friends and family are different. I'm use to having people say crap about my health, which I will address some points in this post. We get so use to people saying crap that we don't even bother saying anything most the time. But enough is enough, I'm taking a stand for all my spoonies. I'm going to explain the living hell we go through everyday You may have been brought to this page because you want to better understand the spoonie in your life or you were talking crap about one. Whatever reason, listen up yall!!!
DISCLAIMER: This is NOT to gain any sympathy by anyone. The only reason we complain about our health is how you would complain about your day. Our health is one of the few things we know about and deal with everyday. So us talking good or bad about it is in no way, shape or form to get attention.
So first, let's define a spoonie and where the heck that name came from. A spoonie is someone who is chronically ill and/or has an invisible illness. The name came from a woman named Christine Miserandino ( click on her name to get her story about the spoon theory) who one day had a friend genuinely asked how her life is as someone who is chronically ill. After talking about the physical aspect they started talking about her energy level. And to sum it up spoons=energy. Healthy people have a high number if not, unlimited number of spoons. They are able to complete the task they need to in a day and are able to do this day after day. Spoonies do not. We literally have the short stick. Every move we make takes away a spoon. If we were to do everything a healthy person would do in a day we either won't last, barely make it, or make it but suffer SEVERE consequences. Severe meaning; that we wipe out for DAYS once we get home, our pain gets worse, or even end up in a hospital because we did more than our body is allowed to.
And the little things that healthy people take for granted can become a huge task for a spoonie.An invisible illness is when someone looks perfectly normal on the outside (no baggy eyes, walking normal, is using their "normal" voice etc.) but is actually very sick. A lot of times people with invisible illness(es) are able to make themselves appear fine when they aren't. The reasons vary from not wanting others to have pity, not to worry others, etc.
Ok so we got that settled. Now here is where I'm probably losing some of yall but wait! Not yet! Yall are thinking "so what, I come home everyday from exhausted, I get hardly any sleep but I keep going" or "it's just mind over matter you just gotta push yourself"
Ok point taken.
For both of these arguments the point is YOU have a HEALTHY body, we do not. Majority of the time if you're chronically ill there is some part of your body that is causing you not to get all the nutrients you need. Its as if your body is a connection of pipes. If one area has a leak or is off set it can cause a lot of damage and where ever that pipe goes to is not getting all of what it needs.. As for the mind over matter game, there are always exemptions to rules and spoonies are the exemption for this one. This does not mean we cannot push our bodies it just means that the way we do is very different than yours/someone healthy.
Ok so where do all our spoons go? Our bodies are working so much harder than a healthy body most the time because it's ATTACKING ITSELF thinking that it's something bad. It's also trying to make up for whatever disfunction our body has. A healthy body is like a castle with its draw bridge up and having guards on patrol. All is good. But a spoonie's body is like the castle being attacked, all guards are called to fight off the attack. Therefore the castle under attack is using more resources to stay the same. Resources=energy.
Another assumption is we just stay in our beds all cozy and la-de-da life is good. First off, we didn't ask to have an illness that disable us. Before we got stuck in bed or at home we were athletes, musicians, scholars, and more. But our world came to a halt when our bodies randomly acting up on us. We tried and continue to try to get back to what we love but our bodies aren't strong enough. Which also brings attention to another assumption, that our pain is in our head or we're faking it. Do you think someone who had a promising career in music, sports, and education would just throw all of that away? Do you think the girl who spent all her free time riding horses would just one day completely stop just because? No. We didn't chose this life. We didn't get sick because of bad habits we have, we just got the shorthand in life.
Some people think we have it good being stuck at home all the time. I hate to burst your little dream bubble but it's not. Sure we have comfy pillows, blankets, and more to snuggle up with. Yes we have tons of shows and movies at our fingertips but your momma was right, there is more to life than tv and video games. Majority of the time because we're not out in the world our social life becomes non-existent. We're not around people to invite us out bowling or to go to the movies. And sometimes people make assumptions and instead of letting us decide if we're feeling good enough to go, they do it for us. (which in all honesty is the worst thing you can do to a spoonie, we are very big on making our own decision instead of someone making it for us.)
Another question that gets asked a lot is: "Are you going to listen to your doctor?" Now, I can kinda understand because I use to be an athlete. The doctor would say stay off your foot for 6 weeks, we would ignore them and as soon as we're able to move around we go back to training and playing our sport. But the thing with spoonies is, if we don't listen to our doctors we can either suffer extreme pain, an ER visit, and for some spoonies, death. Now I personally have always been stubborn and a pusher, but when it comes to going to the hospital I will do everything and anything to stay out of there. I would also do anything to make sure I'm not in such severe pain that I have to have my parents come to me to either get what I need or help me out of bed. I had to learn the hard way on how to push myself. I'm lucky enough to not have my life at risk but I still pay severely for going too far.
And as for work ... a lot of us have things we're not allowed to do because of our condition and/or medication. We're not allowed to be on our feet that long (which takes away most jobs in retail, food, etc) we're not allowed to lift over a certain amount of pounds, do strenuous activity and so much more. Employers are legally not allowed to fire if the reason why we cant do something is health related, so they become creative and ask certain question on your application to AVOID hiring us. We're trying to navigate the career world and find a place we can work. office work is always a top idea but some places are really picky when it comes to experience and if you don't have any you're out of luck. At home jobs are an option but some agencies have a lot of must have. One example, you have to have a landline and dial up internet (what the heck? No one uses that anymore!)
Like I mentioned earlier, our social life also disappears. Part of it is because we live in a society where even though we have phones and social media it's easier to stay in contact and remember someone you see in person. And a lot of times our illnesses come out of the blue and we disappear from school, work, etc. But if we are lucky enough to have people contact us that we stay in touch for awhile but then life happens and they get busy. Which is not a bad thing I want my friends to live their life as they want to. I don't want to hold them back. I want them to live their life exactly the way they want it. Sometimes we have friendships that we learn aren't true which is hard to face. A lot of the time they just assume things and don't even bother to ask. Oh we made plans for Friday and I forgot? or I had to cancel? No these are not excuses but the truth. And yet we get labeled as a flaky person, not them.
In a spoonie life we have to figure out daily if it's worth cooking a meal or taking a shower and if we do most the time we need to lay down or take a break ASAP because our bodies are so exhausted. Daily, we have to see how our body is to determine what we can and can't do today. We face brain fog that is no joke. We forget things not because they're not important but our bodies just don't know how to function properly. We face our pain(s) and side effects of the medications we're taking. We are doing the best we can with our bodies.
So to wrap it up folks, yes life is hard as a spoonie. But in all honesty, We don't show how much we're truly suffering both physically and emotionally. We're constantly lonely but you would never catch a spoonie just straight up saying so. We're isolated from the world. You see us and you say how strong and positive we are and we appreciate. It just shows how well we hide how we feel. If you ask us how we feel, majority of the time we'll lie. But you know what? We're people just like you who needs friends, who needs out the house and support. It's one thing to tell a spoonie you're there for them but to say, "hey let's go see a movie sometime" or "my friends are coming over to play COD you wanna come" can go a long way.
Think back to the last time you were really sick. Like in bed hardly doing anything sick. It wasn't fun right? At one point you got bored and couldn't wait to get back to work or school. After awhile your bed became less comfy and you were just ready for all the crap to go away. Imagine the last time you were in pain, be it because you dropped something on your foot, you got in a fight, or even a splitting headache. Now imagine having to deal with that pain daily. seeing numerous doctors trying to find what's wrong and prescribing medicine to see if it'll help. Imagine after a year or two of pain your body because immune to the medication so you have to find a new one.. Image that no matter what they do, they can't make the pain go away, the medication you're on barely helps or if it does you get really bad side effects to where you're still stuck at home Well guess what, being a spoonie is like that everyday. Our symptoms, pain, and diagnosis may differ but our battles are pretty similar the only thing that varies is intensity and location of pain.
So my healthy folks, if you made it here I thank you for reading this whole thing. And I hope I was able to shine some light and information to you. If I may, I want to challenge you, think of someone you know who gets sick a lot. Or someone you know that got diagnosed with some weird long name you can't remember and have no clue it is. I challenge you to talk to that person and talk to them. Ask them how they're feeling, if they don't mind explaining what you have, show that you genuinely care and I bet you will make that persons day.
Love and Spoons,
Aly
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