Chronic illnesses and pain are a bitch to live with. Especially the ones that people don't see. It's hard to explain to the average person why one day I am a functional adult and the next I can't get out of bed. But on top of that is trying to explain to people the the things my illnesses have stolen from me. If the person knew me before then they see it. Which makes me feel bad because I know they see the differences. If they don't know me sometimes it's not so bad, until I realize they instead think I'm lazy or stupid or both. I wanted to write this post, not for sympathy but to try to explain to the people out there without one of these 'hidden' illnesses why people who do have them seem crazy and angry sometimes. Why while we don't want pity, we do want understanding and sympathy.
To start out let me give you a little background on myself so maybe you can understand the difference between the before me and the me now.
I was lucky. I grew up in a nice suburban neighborhood. I went to great schools and I had countless opportunities. Did I take advantage of them? No. No I didn't. If I had maybe things would be different now. Sure I would still be sick, but maybe dealing with my illnesses wouldn't be so hard. But that's a post for another day. Ten years ago I was 26. I was married, had two kids and a decent job. I had plans. I was on track to go back to school, to work my way up the ladder at my job, to have more kids, buy a house, all the regular things that the average person would plan to do. While I was stupid that I didn't go to college and continue my education earlier in life, I wasn't dumb. I had a brain and was articulate and able to communicate with people. If I didn't like a situation I was able to get up, go out and do something about it. If I had known what would happen 4 years later I definitely would have done some things differently, but again that's another post.
In 2008 I was diagnosed with the beginning stages of congestive heart failure. A little under a year later I was in a car accident that led to chronic pain in my lower back and hip. But still neither of those things explained my chronic tiredness, my other physical pains, and my mental fog. I was lucky though, I had a great orthopedic doctor who referred me to a specialist who finally was able to diagnose me with fibromyalgia. Yea, lucky, I guess.
But when I first started getting sick all those dreams, plans, ideas that I had had...yea, they changed almost overnight. I think that that is one of the first things that illnesses steal from you that most people don't think about. Most healthy people think along the lines of "Hey, you're not dead! So what's the big deal? Shit happens! Plans change!" But it's not like when things happen and you can still get up, go out and do something about a problem. When you're sick your first concern is getting better, or in a lot of cases not getting any worse. When you finally get everything worked out if your case is one of those where it isn't getting any better you look around and it's a shock. Everything you dreamed of or planned is gone and starting over isn't what it would be if you have your health. I no longer have a job. I want one, I would love to go back to work. But the honest truth is I can't. My husband left me while I was in the hospital, he said he couldn't deal with me possibly dying. There goes all those dreams and plans of getting a house together, having more kids, just growing old. Yes, I have made new plans since then. I have realized that I'm better off without someone who obviously didn't love me enough to stick around. I've enjoyed spending time with my girls and watching them grow. But I no longer make long term plans, hell I don't even make short term ones. Yea I plan on doing stuff, but I know there's always a good chance that I might not be up for it. But realizing those original plans were gone. That sucked. Especially the one that I wouldn't be able to have more kids. I'm extremely grateful that my life choices caused me to have kids early on. I have 2 beautiful girls. But I always wanted to have more kids. With all the medications I'm on and my heart condition actually carrying a child would risk myself and the child. Not fair to the child and not fair to the kids I have now. As a single mom without a job adopting a child isn't a choice either, nor would it be fair. I'm not dumb. But all my other plans I could rewrite one way or another, just not that one. It still makes me cry. I know it's dumb. But it does. My drs. think that I should just get my tubes tied. It's the one thing I've refused to do. I know realistically there is no 'cure' for my conditions. I know that getting pregnant and having a baby isn't going to happen. But I had to give up and/or change EVERYTHING else. I just..I'm just not ready for that yet. Sorry. This is supposed to be about everyone not just me. So like I was saying the first things that get stolen are dreams. Those dreams die and they are mourned. If you're with someone that's been diagnosed with something that steals even one of their dreams when they realize that their plans are gone....Please you don't have to help make new plans, you don't have to point out what the person hasn't lost, just please mentally understand that they just lost something that was important. Let them cry, let them grieve. Don't make them feel like shit.
One of the next things that gets stolen is your ability to plan and just function in general. Sometimes it happens right away and sometimes it's a slow downward spiral. No matter how it happens it's incredibly hard to accept that you no longer can just get up and go. Sure you can 'make' plans, but that doesn't mean they're gonna happen. Or if they do, that you are going to be able to enjoy them. Everyday you wake up with a limited amount of energy and some days that energy is less than normal, even when you haven't done anything to cause it the day before. There's actually a great description of this called
The Spoon Theory. It lays it out perfectly. Please if you haven't read it yet go check out the link and do so, But going from being someone who worked over 40 hours a week, who could get up and go on little to no sleep, who could just jump in the car and drive to someone who has to plan out days weeks in advance and literally have to drag myself out of bed some days. Yea, it's a culture shock. It's especially hard when people who know you don't want to accept it. They think that because you're not working and not going out to do things everyday that you should just be able to jump up and go at the drop of a hat. They don't understand that when you say you want to do something, and you want to do it NOW, that you aren't trying to be a pushy bitch. In reality you know that there's a really good chance that if you put off doing something right then and there that when you try to do it later it just ain't gonna happen. They don't understand that last minute plans are REALLY frustrating. You know you're going to end up paying for it, but you feel incredibly guilty if you say no. On top of that just the fact that you have to depend on others for help for everyday things is just embarrassing and when you've burnt yourself out from a last minute 'occasion', you're just not going to be functioning. Needing help getting dressed or taking a shower. Needing someone to help get stuff off a shelf for you because you can't risk climbing up on a step-stool or getting on a ladder because you get dizzy. Not decorating the outside of the house for Christmas, much less cleaning the yard, because it's just too much. And when people just look at you when you ask for help like you're lazy....It sucks. You just get to the point were you stop asking.
You also lose time. Not just forgetting if you've done something or have something to do. But one minute it's Monday and the next thing you know it's Wednesday and the things you planned to do are no longer possible. Or people say call me sometime and you plan to do it, you really do, but then it's three weeks later and you still haven't called. They're convinced you're ignoring them, since you obviously don't have anything else you've been doing. But in reality you just lost track of time and now it's just awkward to pick up the phone and have to try to explain.
Finally one of the most insidious things that happens is one you don't realize until it's too late. Sometimes it's caused by the disease itself, sometimes it's caused by the medications you need to keep functioning. But because it happens so slowly, and it's rarely talked about, it's incredibly hard to prepare for. Ever so gradually you start to lose parts of yourself. Memories are gone before you have a chance to realize they aren't there anymore. You lose words that you usually use on a regular basis or you lose the ability to adequately express yourself. For the later the worst is when it's a combination of the two. First you start talking and realize that you've used the wrong word. For example you say stove instead of fridge. Then you try to correct yourself and part of your brain knows what it wants to say but somehow your unable to make your mouth say what you want it to.It's frustrating when it happens in the privacy of your own home. When it happens in pubic. It's flat out humiliating. As for the former the best I can do to explain is give a personal example. For years the smell of Polo cologne made me infinitely sad. It's a trigger that used to bring back memories of a dear friend who passed away years ago. But recently the smell brings on full blown tears. Not only because of the reminder of my friend, but because I know there are things I can no longer remember about him. Those blank spots just hang out there in my brain and wait. Springing their cruel traps at the oddest moments. The inability to remember the color of my friends eyes, the sound of their voice. Knowing when I look at pictures of my children when they were younger that they ARE pictures of them. But until I see the pictures, for the life of me, I couldn't remember them at that age. And please don't ask me to tell you the reason behind the picture, the time it was taken, or why it out of so many is so important. It's heartbreaking and horrible depressing.
And that depression oh that is one of the many gifts that these invisible diseases decides to leave behind. Depression that you no longer can do the things you used to, you can no longer remember things that were once an integral part of your soul, and the knowledge that these things are happening and there doesn't seem to be a way to stop it. The depression just makes all these stolen things even more apparent and it slowly drains your will of trying to fight it. When people tell you that you are exaggerating or purposely being difficult. The depression slowly takes over any positivity you've fought to hold onto.
There are so many other things that get stolen along the way. Some much more obvious than others. To get into all of them would take up way more space than this already overflowing post. As well as the fact that some I know I would forget. It's taken me almost a week just to write this post. Having to look up words that used to come to me as easy as breathing. Writing and then deleting whole paragraphs because I feel I've gone off on too much of a tangent. At one point I answered the phone a few days ago and I just had to stop for the day. My train of thought had been derailed and I had been thrown so far from it I couldn't find my way back. From one simple 10 minute phone call...
I don't want pity. I don't even know why I'm writing this anymore. Maybe it will help someone who doesn't suffer from Fibromyalgia, Lupus, Crohn's, Chronic Fatigue, Chronic Pain, Migraines, Heart Disease, Arthritis, Anxiety, and too many more to name, but maybe it will help them to understand just a bit of what someone who is actually goes through. Maybe they will understand that saying "If you just get up and move you'll be fine." "If you don't think your sick, you won't be." "Oh come on, it's not that bad." "You've been in bed all day, maybe you've just slept too much." Maybe they will understand that these comments aren't encouraging, they are more of a slap in the face to someone who is sick and suffering. It lessens their illness. It lessens the physical and emotional pain that they go through every day. It makes them feel as if there is no reason to say anything anymore because no one is listening. I'm not saying don't try to be positive, or don't try to give them encouragement. But realize there is so much more going on that people who are suffering from these illnesses that they don't say. Maybe ask if there is anything they need. Just be there. Understand when they don't call or come out for every event it isn't personal. When they say no to a request, just say ok, and actually be ok with it. Offer to help, or don't offer, just help. Yea it will still make them feel bad, but don't say anything about it, or if anything just say it's ok. Tell them you have a laundry obsession and have run out of clothes to wash at home, so they really need to let you wash their clothes to fill that addiction. They'll know you're lying. But they will appreciate it, even if they don't say so. Don't make them feel guilt by making them feel they've let you down in some way. Cause trust me guilt over the inability to be the person they used to be is already something they are familiar with.
Again if you're still having trouble wrapping your head around what it's like to live with a chronic condition I encourage you to read
The Spoon Theory by Christine Miserandino. Her words are much more organized and understandable than mine.
