The Isolation Of Trying Not To Lose Yourself To Your Illness
You never think that one day you’ll wake up sick and never get better.
But that’s exactly what happened to me.
Chronic illness brings a slew of physical symptoms – I’m always in pain, I have difficulty eating, I often have to rely on a wheelchair and so much more.
When we think about being sick, we think about our physical state of being. Not much attention is given to the mental and emotional toll that chronic illness can bring.
However, the mental turmoil can often be worse than the physical despair.
It feels like so much of my identity has been slowly chipping away as I drown in all of this pain and chaos. When your abilities are lost, it can feel like you’re losing parts of yourself. The things that you used to do that made you feel like you slowly but surely start to disappear.
There is so much that I want to do, things that defined who I was and what I wanted to be, but often all I can do is lay in bed and try to make it through the day.
Everyone thinks that because I’m home everyday, I have all the time in the world to do whatever I wish. That is not true.
I find that I have no time to just be myself because all of my time is spent just trying to rest and cope with my symptoms… all of my time is just spent trying to make it through the day.
I want to be able to reply to everyone’s messages. I want to be able to keep up with all my friends and family. But it’s just so hard. I don’t feel like me. I don’t feel well. I try to wait til things ease so I can give my all to you.
Think about if you’re at work and someone messages you, you can’t reply right away because you’re occupied. You might not reply till you get home from work and finally get time to relax. Or if you’re studying for an exam, you might delay replying to your friends because you’re occupied with trying to pass your course.
That’s the problem with me. I am ALWAYS occupied with my illness.
With work and school, the madness eventually ends at the end of your work week or at the end of your semester. That’s when you take the time to be there for your family and friends.
But with chronic illness… it just never ends.
It never stops. I never get a break. I never feel relaxed.
I never get time for me. I never get time for you.
I see the messages with the intention that I will reply when I can manage to say something beyond how much I’m hurting and can give you my full attention.
When I talk to you, I want to be able to give you my all. I don’t want to be a cloud of despair and ruin your day because of how bad I feel. I care about you and your life. I don’t want it to be all about me. I try to wait until I am able to give you the attention you deserve.
But then the hours turn into days. The days turn into weeks. The weeks turn into months. Yet in all of that time, this sickness just doesn’t stop. It doesn’t let up. And then it seems like I don’t care because I’m ignoring you. But I’m not.
I always aim to try again tomorrow to be there for my family and friends. And the next day. And the next. But I’m fighting an uphill battle. I fight every single day, despite the fact that I don’t always win. I try my best to be there for the people in my life as much as I can. But sometimes my best seems to just fall short.
I still feel like I disappoint everyone around me because it seems like I’m not trying hard enough.
But then in the situation where I feel like crap and I do reply.. it simply seems like I just don’t care. My replies are generic and bland. Pain does that to you. Sometimes I just have nothing to say when I don’t feel well. I feel like a terrible friend.
So I try to wait until I can manage to be me and to give you my full attention. But that doesn’t happen often….
So time passes, and then when I don’t reply, it seems like I’m ignoring you. It seems like I couldn’t care less about you. But I do care. I promise that I do. It’s just that I am drowning in these symptoms and it’s so hard for me to reach out.
My existence is often mere survival, not actually living.
People want to talk to Sam, but she’s not always here. Sometimes I just have nothing to say because all I can think about is how much pain I’m in. Sometimes I just have nothing to say even though I’m listening to you, and I care. I feel like I disappoint people because they want to talk to me as a person, not just as this disease. But sometimes the pain does engulf me. I come off cold. But I am trying. I am doing the best that I can, even if it seems like I’m not me at all.
But please don’t give up on me.
I am slowly trying to piece myself together again.
I am trying to be the best person and friend that I can be. It will take time… lots of time. But please don’t forget about me. Please don’t think that I am ignoring you and that I don’t care. Please don’t stop inviting me out even though I am often unable to leave the house. It hurts to be overlooked and forgotten. I am thankful to the people who continue to bombard me with love and attention even when I disappear and don’t feel like myself.
Please don’t forget that somewhere inside of all of these diseases, I still am a person deep down inside who is trying to reach out and cope in the best way that I can.