Living with a chronic physical/mental illness can be overwhelming, frustrating, and simply just plain hard at times. A lot of the time, you might feel like no one else understands what you're going through, which in a way is kinda true. Some days you might just think "What is the point of this, why is this happening to me?" You hear over and over and over again, "But you don't look sick." Which makes you want to scream.
All in all, there's a lot I knew when starting off, and there's a lot of validation I didn't get from others. If you read through this and go "wow this is me" then I've reached my goal of letting you know: You are not alone.
1. You know your body better than anyone else.
Don't let anyone tell you that nothing is wrong. You know your body better than any doctor, you know how you were feeling before, and you know how you feel now. If you know in your gut something is wrong, listen to it. Find a doctor that will hear you out and exhaust any ideas, conduct any possible test. Believe in your own instincts and trust yourself.
2. There will be times when you feel like your body isn't your own.
You may gain weight, you may lose weight, you may have sunken in circles under your eyes, your skin could pale out, it may get dry and peel, even your hair could fall out. These things will make you want to distance yourself from your body. Sometimes people find it easier to cope with this by being destructive towards their bodies. Trust me on this: Destroying your body will not destroy your illness. You have to accept the fact that this right now, isn't your body. Your body is owned by your illness and you are not the cause. You did not make this happen. But your body is yours, take control of it. Most importantly, love it.You have to appreciate it for working hard on the inside despite the fact it doesn't look how you want it to on the inside. Your body won't have these problems forever. You will take control of it again, but for the time being, love your body.
3. Some simple tasks become super difficult, and because of that relationships might falter.
People won't understand that getting out of bed for you sometimes takes as much energy as running ten miles any healthy person. They won't grasp the idea that even though you're physically there, mentally your mind is occupied by other things. Whether it be the amount of pain you're in, or how you're practically asleep because you just can't keep your mind turned on. This makes classes extremely hard. How are you expected to learn a lesson when you can't get your mind to count to ten? Gatherings with friends? Forget it, you might as well be a fly on the wall. Don't get me wrong it's not that you don't want to be present! Sometimes its just too exhausting.
4. Listening to your body when it's telling you that you shouldn't do something, is going to be super hard.
You're gonna want to go out with your friends. You're gonna want to be normal. Well you have a normal, a new normal, one that doesn't include spending your energy on partying, going to the mall with friends, or even going to the gym. You are now responsible for the very small budget of your own energy. You don't get the luxury of waking up every morning refreshed and ready to start your day. You, unfortunately, have to wake up and be responsible. You have to be responsible and save your energy for when you need it most, you can't go wasting it on things that aren't as important as getting to school, or even getting out of bed.
5. Helping others understand your bodies limits will be just as hard.
You'll lose some friends. Friends who won't try to understand what you're going through, or just aren't capable. They'll see your condition as your excuse not to hangout with them. They'll get mad and distance themselves from you. You'll wonder what you did wrong. But you did nothing wrong. They just don't have the capacity to sympathize with you. But let me ask you, wouldyou really want a friend like that anyways?
6. No one else is going to understand what you are going through.
Everyone experiences physical and mental illness differently. You may have the same diagnosis, but it will effect you in different ways. It will hit you at a different time in your life, it will change you in different ways. It will be different. Either you are worse off than the person you're talking too and felt like they couldn't comprehend it, or you feel guilty because you are complaining about someone who has it much worse. This doesn't mean you are alone.
7. Your family will try to comprehend what's happening, but you can't blame them when they aren't able to.
Your family is your rock. They are the people who saw you when you were healthy and when you weren't. They saw you wither away from glowing and happy child, into the shell of the person you once were. As much as you'll want to be angry with them for not understanding or worse trying to claim they understand, you have to step away from yourself and accept the fact that they are not in your body. They cannot feel the pain you feel, they cannot grasp the fatigue you live with. They cannot fathom the fact that their child, their sibling, their grandchild could be suffering so badly. But that is kind of a good thing. You don't want them to know the pain you feel. You don't want them to experience the exhaustion you've felt every day the past how many years. You don't want them to know, because it would take them experiencing it themselves to fully comprehend it.
Even though it may feel like it sometimes, you are not alone. And you wouldn't wish that on anyone. Yeah there might not be a person standing right in front of you screaming, "HEY YOU, YEAH YOU I KNOW WHAT YOU'RE FEELING!", but there will be someone somewhere who just might be going through something similar. Like I said earlier. No one will have your same experience with your illness, but that doesn't mean they haven't felt similar emotions to you. Often times we feel helpless, how can we not? But even feeling helpless together, feels better than feeling helpless alone.