Emotional Pain
Many people have no idea what goes along with chronic pain. By this I mean the emotional toll it takes on the person with chronic pain and those around them.
At first, everyone is upset and confused. It takes a long time in that stage. Then, it turns to anger and annoyance. That sticks around for a long time as well. There's all sorts of emotions that my parents felt because they had to watch their little girl fight a battle they never thought would happen. Sure, they expected bumps and bruises or little things here and there. Never anything like chronic pain. As my mom says "I didn't know I had to worry about that." (That being JRA)
I eventually learned I had to give my dad 'jobs' so he felt like he could do something for me since he hates so much he can't get rid of my pain. So, I always asked (still do) for him to cook for me. My love for food I think comes partly from this. If he didn't cook, we would go out to eat. I learned what I liked and didn't like. I learned my love of food pretty early and it quickly became a daddy/daughter date which we still do to this day.
I learned fast that my mom, the nurse, had to treat me like a patient and care for me by making sure everything I needed was around. She did everything and more. She did things that drove me crazy at times because I had no idea why I had to do something so minor. "It'll make you feel better" she will say. At first, I would fight her on it (still do). Eventually, after a lot of bickering, I would agree even if I didn't think it would do anything at all. Usually, she was right. This dance of bickering still happens all the time, not just with medical things. But as you might have guessed, she's still usually right.
It has taken me a very long time (fourteen years to be exact) to come to the mind set I have now with my pain. It took me multiple therapists, long talks with friends, many writing sessions with my journals/blogs, and lots of long drives to realize that my chronic pain is there but it's part of me and I'm part of it.
As I got older and finally felt okay with telling my friends that I had JRA and wasn't so ashamed of it, my friends would ask about it every now and then. I don't always know what to say, even today, when friends ask about my pain. I just assume everyone forgets about it because it's not something that I talk about all the time.
One of my best friends, one I've known since third grade, asks me about all my weird medical things. She has encouraged me and asked many questions about what goes on with me medically. She is one of the reasons why I have been able to answer questions about my JRA because she is one friend that tries very hard to understand.
On the other hand, I've had plenty of people ignore it or forget it's why I take a while to get out of bed or why I moan and groan when I move around.
There were multiple phases of my emotions where I had so many internal issues with my pain and why I was how I was, I was angry at everything. Picture an angry teenager, now picture an angry teenage girl PMSing. Great, now picture that same angry teenage girl in pain all over and had no idea how to express it.
It's terrifying to deal with let alone picture.
I hated everyone and everything and I didn't care about what was going on. I was mean and bitter and I just wanted to sleep, all the time. Depression was very real in my teenage years, along with the past few years.
Luckily, I am not that person anymore and I realized that my pain was what was causing those bitter, angry behaviors. Sometimes, if my pain is worse on some days, I get mean again. I snap at people who haven't done anything. I get angry at little things like waiting in line at the store or if something isn't where I thought it was.
A lot of this is related to my pain and a lot is also not getting enough sleep because I stay up when I'm in a lot of pain. I just can't fall asleep, so I stay up. Plus, I've always been a night owl.
So all of these things play parts into emotional pain that goes right with chronic pain. It takes a lot to come to terms with it. It's a rocky road that is often more painful than exciting. It's something I still have a lot of problems telling people about.
I don't know how to say, "sorry I hurt more today, excuse my attitude." I don't know how to tell my parents that after fourteen years of this. I don't know how to tell people I just met. Or bosses, none of that. It's not really acceptable to have an attitude because something is going wrong. You are suppose to be a kind human being and that is hard even without pain!
If you know anyone with chronic pain and they are being quiet or mean, maybe give them some slack or do something to cheer them up. I promise you they aren't trying to hurt your feelings, they just hurt.
It's also very hard to explain all of these things without getting what I call "pity face" because I don't want pity or sympathy for things that I deal with. I just want understanding which is a lot more difficult for people than many realize!
I'm sure I'll address this topic again.
Thanks for reading,
Leah
At first, everyone is upset and confused. It takes a long time in that stage. Then, it turns to anger and annoyance. That sticks around for a long time as well. There's all sorts of emotions that my parents felt because they had to watch their little girl fight a battle they never thought would happen. Sure, they expected bumps and bruises or little things here and there. Never anything like chronic pain. As my mom says "I didn't know I had to worry about that." (That being JRA)
I eventually learned I had to give my dad 'jobs' so he felt like he could do something for me since he hates so much he can't get rid of my pain. So, I always asked (still do) for him to cook for me. My love for food I think comes partly from this. If he didn't cook, we would go out to eat. I learned what I liked and didn't like. I learned my love of food pretty early and it quickly became a daddy/daughter date which we still do to this day.
I learned fast that my mom, the nurse, had to treat me like a patient and care for me by making sure everything I needed was around. She did everything and more. She did things that drove me crazy at times because I had no idea why I had to do something so minor. "It'll make you feel better" she will say. At first, I would fight her on it (still do). Eventually, after a lot of bickering, I would agree even if I didn't think it would do anything at all. Usually, she was right. This dance of bickering still happens all the time, not just with medical things. But as you might have guessed, she's still usually right.
It has taken me a very long time (fourteen years to be exact) to come to the mind set I have now with my pain. It took me multiple therapists, long talks with friends, many writing sessions with my journals/blogs, and lots of long drives to realize that my chronic pain is there but it's part of me and I'm part of it.
As I got older and finally felt okay with telling my friends that I had JRA and wasn't so ashamed of it, my friends would ask about it every now and then. I don't always know what to say, even today, when friends ask about my pain. I just assume everyone forgets about it because it's not something that I talk about all the time.
One of my best friends, one I've known since third grade, asks me about all my weird medical things. She has encouraged me and asked many questions about what goes on with me medically. She is one of the reasons why I have been able to answer questions about my JRA because she is one friend that tries very hard to understand.
On the other hand, I've had plenty of people ignore it or forget it's why I take a while to get out of bed or why I moan and groan when I move around.
There were multiple phases of my emotions where I had so many internal issues with my pain and why I was how I was, I was angry at everything. Picture an angry teenager, now picture an angry teenage girl PMSing. Great, now picture that same angry teenage girl in pain all over and had no idea how to express it.
It's terrifying to deal with let alone picture.
I hated everyone and everything and I didn't care about what was going on. I was mean and bitter and I just wanted to sleep, all the time. Depression was very real in my teenage years, along with the past few years.
Luckily, I am not that person anymore and I realized that my pain was what was causing those bitter, angry behaviors. Sometimes, if my pain is worse on some days, I get mean again. I snap at people who haven't done anything. I get angry at little things like waiting in line at the store or if something isn't where I thought it was.
A lot of this is related to my pain and a lot is also not getting enough sleep because I stay up when I'm in a lot of pain. I just can't fall asleep, so I stay up. Plus, I've always been a night owl.
So all of these things play parts into emotional pain that goes right with chronic pain. It takes a lot to come to terms with it. It's a rocky road that is often more painful than exciting. It's something I still have a lot of problems telling people about.
I don't know how to say, "sorry I hurt more today, excuse my attitude." I don't know how to tell my parents that after fourteen years of this. I don't know how to tell people I just met. Or bosses, none of that. It's not really acceptable to have an attitude because something is going wrong. You are suppose to be a kind human being and that is hard even without pain!
If you know anyone with chronic pain and they are being quiet or mean, maybe give them some slack or do something to cheer them up. I promise you they aren't trying to hurt your feelings, they just hurt.
It's also very hard to explain all of these things without getting what I call "pity face" because I don't want pity or sympathy for things that I deal with. I just want understanding which is a lot more difficult for people than many realize!
I'm sure I'll address this topic again.
Thanks for reading,
Leah
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