A normal person, from the outside. School, friends, sports. A normal person, from the inside. Dreams, goals, aspirations. Though my secret life begins to take hold, it begins to leak to my closest friends, slowly making them not my closest friends, it begins to leak to my educators, creating a wall of superficial pity, it begins to leak to the public, showing an image that I tried so hard to keep down, to keep to myself.

An image of a angry soldier, fighting to live day in and day out. A person who gets flagged as a cripple, as a drug addict, as weak… That’s who I’ve become. A person that no one wants to talk to on a bad day, because chances are my bad day will make yours much worse, though words, through actions. That’s not who I am.

It’s arguable that the only thing worse than living with chronic pain, is having to deal with the people around you, whilst dealing with chronic pain. “Wow, blue tape today”, “oh, yellow tape, very nice”, “the green tape doesn’t suit you”, “you must be feeling better, you’re not wearing tape!”. “Have the doctors figured it out get?”, “are you sick and tired of wearing braces and tape all the time?”, “does it hurt?”, “can I touch it?”, “why weren’t you at school yesterday?”, “another doctors appointment?”, “did your doctors even go to medical school?”. “You look horrible today”, “you look better today”, “you look like you haven’t had any sleep”. “You should see my doctor”, “you should try acupuncture”, “you should see a psychiatrist”, “you should take a break”, “you should take some Panadol or Neurophen”.
“You should try harder”…

The only thing that spices up my life is seeing new doctors and wearing different coloured tape, let me and my tape be. And certainly, when I’m not wearing my tape, it does not mean I’m better, most probably worse, and was in too much pain to apply said tape. No, the doctors haven’t figured it out yet, and yes, they went to medical school, and as it happens I am seeing the best specialists in the state, so you giving your medical suggestions doesn’t help me one bit, and you bagging on my very hardworking medical professionals won’t achieve anything but make me more angry, they’re doing all they can, there is a reason it is called ‘unexplained pain’. Yes, I am sick of wearing tape and braces, and yes, I’d much rather have them off then on. Of course it bloody well hurts, what did you expect? And no, you can’t touch it. Thank you for telling me I look horrible, it’s makes me feel so much better, and you can probably assure yourself that I had the same thought and overwhelming feeling when I got out of bed that morning. Also, thank you for telling me I look better, it doesn’t, and won’t, make me feel any better, ever. And if I look like I haven’t had any sleep, that is most probably because I haven’t, because, as it turns out, it is quite hard to go to sleep when pain plagues your nights. My team of doctors is probably better than your GP ten fold. Acupuncture won’t help, nor will Bown therapy, yoga or witchcraft. My mental health is fine, I don’t need a shrink. I think I am more than qualified to know when I should take a break. Panadol or Neurophen, even both of them put together, don’t even come close to the course of pain medications that I am on. And for heaven’s sake, I am trying my hardest. I am here, at school, almost every day, other than the days I am sitting with my legs wrapped around a chair in a doctors office. Sure, it takes its toll, I get angry, I get impatient but I’m still trying to live my life. I am still a human being, and I am still able to pull my weight, the only difference between you and I, is that my weight is 50 fold heavier than yours, and I am pulling mine through ten feet of mud.

I am living, just as every other person, there is no need to segregate me into a little pen of the unwilling and broken, population of only one. I am willing and I am not broken. I am strong. I can see through the clouded vision of pain, I can push through the voices that titter at my head, I can overcome the pain, if not halt it in its tracks. Though, alone it is very hard.

I want them to see, I want them to understand. I want them to empathise. I don’t want pity, I don’t want sorrow, I don’t want a cutting of flowers and a box of chocolates with a nice card every week, all I want is for them is a shred of integrity and understanding. The line between the two seems to get so clouded, and that rarely ever gets addressed. From the outside, a person who would see me on a daily basis, but not know me, would know that I live in some sort of pain, and that I was not the most pleasant person to be around. From the inside, a person who knew me well and took their time to talk to me, would know that I struggle a lot, but I push through the pain, they know when the pain is talking, not me. Though neither of these two groups know it true…

Pain is my best friend. I’ve stopped reaching for the white flag, and have kept fighting. Everyday is like a little battle, and everyday, when I take my last set of drugs and lie in bed, a little victory is on my side. Even though this happens, everyday, I’m still losing the war. No matter the amount of little wins I gain, there’s no hope for a victorious war. I’m lost for hope. I’ve given in. Every time I used to see a new doctor, or a new specialist, I used to entertain the possibility that this one might know. And every time afterwards I was silently reminded by myself that there was a reason it was called ‘unexplained pain’. I am strong, though tiny little chips have been made every day, and I’m at breaking point. My story isn’t a glamorous one. Nor is it one that is in sights of a happy ending. I try to live in the future. For the last few years I have worked so hard at school to set myself up for the career in medicine that I have wanted for a while now. Though that sometimes seems as if it is sliding away, that it was a foolish goal, being easily stopped by the army that is pain. Will it ever go away? I’ve learnt over the years to be hard, to grow a leathery skin, so that nothing can get in, and nothing can get out. Though, this has left me with no feeling for the niceties of our society.

All I want is people to see that, to understand that.

I don’t think life is meant to be a losing war, but I guess some manage to pick up the broken army.

I would like to start by saying that I cried when I read “Letter to People without Chronic Pain“. I was diagnosed with 3 herniated discs in my neck, multiple bone spurs and degenerative bone disease. I had been working for years with neck damage and had no idea! Neck pain had become a part of my life and considering that I was in my mid to late 30’s I knew I was no longer a spring chicken. So until the morning of August 17, 2012 I thought that I was healthy as a horse.

August 17, 2012 at 5:00am started out like any other day. I got up started my coffee and proceeded to take a shower and get ready for work. By the time I got out of the shower the pain was so severe that I laid down on the couch and to my absolute fear I could not move! I also was having trouble breathing mainly because every time I tried to take a breath it felt like a vise was around my ribs and chest! I could not breath, I had no idea what was wrong with me.

When my doctor came into the room after I had an MRI, my jaw dropped as did my doctor to be honest. She stood there with one hand on her hip and told me that I have 3 herniated discs, multiple bone spurs and degenerative bone disease. I thought ” how in the world does this happen to some one who has never even been in ANY kind of accident! Her only explanation was the degenerative bone disease mixed with the type of physical labor work that I have always done ( and some weight lifting in the past ) had created this problem.

I went to a specialist was told surgery was not an option because no doctor where we live would touch me because of where the discs are and how they are herniated. So I went through physical therapy and home traction, which did help for a little while. After my case went from a short term to a long term disability case my employer with the state terminated my position and I lost my insurance. When that occurred I was no longer able to go to the doctor as needed and I lost my long term disabililty and my disability advocates. I have since tried to go back to work, but I am unable to do the same type of physical labor work that I used to do. Since trying to work I have noticed new symptoms. Some times I think that my husband thinks that I am full of it, and some times even rolls his eyes when I mention pain. But he has NO idea how bad my pain is! It is not just Physical pain but now has become Emotional pain as well.

Until this happened to me I worked took care of my kids, and now I can not hold a job! People look at me like I am full of it, like I am trying to ride the system! That could not be further from the truth! I want my life back, I do not want to be in pain literally 24/7! I want to sleep at night, ALL NIGHT and not wake up 4 times a night because an arm or a leg has gone numb or because I had my head in a wrong position for to long and a sharp pain wakes me up!! I am trying to get some financial assistance as a hospital near where I live but it is taking forever. I am even trying to get help from state and they are questioning why I have quit 2 jobs. I do not have an advocate or medical prof anymore of my condition because I have lost it all. All I do when I am by my self is cry, I want the pain to end, I want to stop feeling like people are judging me and talking about me like I am this drain on society! I do not know how much more I can take! Even my concentration is suffering, I feel like I am going CRAZY, I WANNA DISAPPEAR!!!!!