I’ve been trying to put into words what it’s like for me to live with chronic pain for a while now. It’s quite difficult to explain living with chronic pain beyond ‘it’s difficult’ without seeming overdramatic. However, I think it’s worth having a go. I’m going to split this into three parts.
- My motivation for writing about it
- What the problem is and how it came to be
- Chronic pain and me
If you want the main portion of the article, skip to the third section. The other two are brief and largely explanatory.
For those who don’t know, chronic pain is usually defined as pain that’s continued for over 3 to 6 months. Everyone experiences it with different levels of intensity and react to it in different ways. With that being said, this post will be completely personal to me. However, I hope it’s still useful if not entertaining.
My motivation for writing about it
I find writing therapeutic. Trying to write my thoughts out in a clear manner is helpful even if the result isn’t always particularly successful. I’ve made a few efforts to understand what I feel about the illness. They haven’t made it very far since my initial reaction tends to be nothing more than frustration towards it.
However, what could be more important than that is giving an insight into the issue to other people. The reason why this is important is not because I desire a flood of sympathy. It’s because a simple understanding of various illnesses, disabilities and limitations prevents prejudice and judgement formed due to ignorance. Not everyone has learned to withhold quick judgements so it’s useful to educate where I can instead of feeling victimised which will result in an even worse attitude towards the problem.
What the problem is and how it came to be
My medical problem is somewhat complex and boring to explain but I’ll try to keep it short. I won’t run through a detailed timeline of the issue.
The large majority of my pain comes from my back injury that was sustained about 5 years ago playing rugby. At least, that’s what I’ve been told. In reality, I don’t remember getting hit in a bad way or a specific moment where all the back pain came from. It just steadily got worse until I had to stop playing the sport. I have slipped discs in my upper back that rest on my spinal cord which slightly complicates the issue a bit more.
I still use a walking stick because my right leg is weak because of my back problems. More recently, I’ve also found that my hips are a bit rubbish so that’s affected my walking also.
Chronic pain and me
My relationship with my pain has changed a fair amount over the five plus years that I’ve had to experience it. It’s moved from apathy to anger to optimism which is sometimes marred by pessimism. To say it’s been a smooth ride would only be dishonest. Sometimes I wish that I could keep the bright optimism that I once had but of course, the experience has to change the longer I live with it. It’s the human thing to do.
In the first two years or so of my injury, it’d be best to describe my feelings towards the pain as positive. Yes, I was in pain for most of the time, but that doesn’t matter too much. I’ll get better soon because it isn’t meant to be a very long term problem. The saying ‘other people have it worse so I’m fine’ often found itself in my justifications for why I was still happy. In some cases, I’d feel bad for complaining about the pain because in perspective, while my condition may have been worse than my friends and family, in the larger scheme of things, I was pretty lucky. After all, I could still see, eat good food and laugh. I couldn’t do sport or do things I enjoyed for as long as I’d like. But that was fine. I’d just adapt and slowly get better.
This reminds me of the time when I was stretching in class and my history teacher quickly remarked ‘it looks like you’re dancing!’ to which I later thought, since all good thoughts happen in the shower after the actual event, then invite me to the chronic pain disco! At the time, I laughed and continued to read whatever I was reading at the time. Such comments didn’t really make me feel isolated or worse off because of what I was experiencing. I just didn’t need to feel singled out because I was in pain all the time.
As I grew older, I began to view my pain in a different way. I went from a phase of using perspective to make myself feel better to feeling frustrated and sad.
The longer the pain lasted, the greater my feelings of frustration and hopelessness became. After two years or so, my optimism slowly began to crack and one of my most poignant fears revealed itself to me.
This pain is normal.
That might sound odd coming from a person who had already experienced it for far longer than necessary. Why had it taken so long for this to happen? If it’s normal, doesn’t this mean I can now live a more fulfilling life around the pain?
To the first, I’ll answer with a brief story. I went to my doctor for a check up on the most recent MRI scan I had taken. As is rare with pretty much every person in existence, I remember going to the hospital happy and hopeful. It was possible I’d be told there was a great improvement in my condition and I’d get some kind of timeline for when I could expect all of this to end. Almost as wonderful as being told two hour lecture would end early. I sat down and after a discussion of how useless my doctor finds my Philosophy degree dressed up in backhanded compliments, I was told that there wasn’t a difference in the scans that I had taken months ago. He’ll see me again in a year and hopefully there will be a difference then. When I got home, the frustration of being told such a disheartening thing resulted in me kicking a hole in my door. (Almost shocking from the guy who enjoys writing a lot about the value of meditation, right?)
Following from that moment, I guess it dawned on me that I could be stuck like this for a while. I could no longer fight it by comparing it to people who were worse off than me. I lost the comfort of genuinely being ok with my situation. I had to begin the arduous process of accepting my condition.
To the last question, yes and no. Realising the pain is normal has led me to improve some areas of my life. For example, I started meditation much earlier than I probably would have in an attempt to find more peace with my pain. Studying, by necessity, had to become much more efficient otherwise I would never get anything done on time. Such skills have spilled over to other areas of my life since being like this has simply motivated me to learn more about how I can improve myself and get back on a normal level playing field.
As you have hopefully guessed, the positives comes with its negatives. Realising the pain is normal has highlighted the fact that being in pain every day and tired as a consequence of that shouldn’t be normal for a 19 year old. With the pain being such a large part of my everyday life, my feelings of loss likes to tap me on the shoulder then punch me in the face. “You can’t go out with friends without being in pain!” “Can you walk around university without feeling tired and frustrated every single day? Of course not.” “Let’s be real, I took away parts of your teenage hood and I’m fine with it.”
Well, that’s what it would say if my feelings could talk like they were separate people. Instead, I’m faced with the wonderful task of reminding myself of those facts. It leads to a strange situation of trying to toe the line between self-loathing and blaming something on my pain. My situation has taken away small freedoms that I usually would take for granted and they’ve cumulated to restrict me greatly. Being able to work on something I enjoy is frequently marred by pain that hinders my concentration. Working on an essay takes far longer than I think it should because I’m too tired to work for longer than 20 minutes at a time. Even not being in pain is interrupted by the knowledge that it will come back. It leads to feeling extremely guilty for resting during those periods instead of making the most of it. Simply living my days without pain in mind was taken away.
Far too often, I fall on the side of self-loathing. I blame myself for things I know are not completely in my control. I get angry when I can’t complete something on time because of the pain. Why can’t I just work through it? Man up and get it done.
As much as I try, I cannot. I try to convince myself I can but it results in anger and disappointment. I’m unable to just brush past the pain even though it’s so familiar. Despite the pain being a regular occurrence in my life, it definitely hasn’t lost its potency. In a way, this familiar thing always feels new. It’s as powerful now as it was when we first became acquaintances.
Following closely from this is the indefinite nature of the whole thing. As I mentioned earlier in my brief story, I was told to wait by my doctor. Years later, I’m still waiting. I haven’t been told any kind of timeline for when I can expect my condition to get better nor have I been told it’s permanent. Given that information, I’ve tried a large variety of things to cope with or fix the problem but none have shown themselves as a solution to it. How many times need I answer the question of when can I expect to get better with “I have no idea”? Having to say that to other people and myself has proven to become a huge emotional burden. Maybe part of me has become tired with it all. Dealing with it day in and day out not actually knowing when it’s going to end has sometimes driven me to the point where I’d rather just disappear. Not die, but no longer exist so I finally have some rest.
If I’ve made it to this point, what could I be waiting for? It’s been years and an end doesn’t look to be approaching any time soon. I’m waiting for it to get better. I’ll eventually be free from the pain, worry about regular things and enjoy my days like I should have been for the past few years. My optimism has not failed completely. Even during the times where I’ve felt the most depressed. This problem is very difficult but I have valuable positives to take from it. I’ve become much more involved with personal development. Helping myself and (hopefully) other people become better and find peace with themselves is wonderful. I have wonderful friends and family with colourful life experiences who have and continue to bring joy to my days. I have a place to talk about this where people will listen so what I have written won’t be greeted with silence.
And finally, I’m still here.
Chronic pain for the most part is silent. One needn’t grimace all the time if she’s in pain nor does she need to cry when she gets home. She can just have the pain and live with it.
For those who have suffered in the past or currently are dealing with the problem of chronic pain, I hope that your relationship with it doesn’t become one of hate or anger. Of course, it’s terribly difficult to remain the happiest person in the world when you feel the suffering is so potent, meaningless and unfair. However, if it’s something we are to live with temporarily or permanently, that time, hopefully, won’t be of complete despair.
Unfortunately, I cannot give any professional advice on dealing with chronic pain but I do invite others to share any experiences they may have had with such issues. Perhaps we can help each other. For those who know someone else suffering from chronic pain, I can say the least one can do is to offer a warm smile and helpful hand if they need it. Depending on the length and severity of the pain, the relationship with it can change quite substantially. Chronic pain is just as emotional as is it physical.
In a way, writing this post has exposed a vulnerability I could have hidden but chose not to. Sharing my experience with it may have helped or you might simply know me slightly better now.
Whatever you may have gained from this, thanks for reading. It’s greatly appreciated.