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Uncensored: Living With Chronic Pain

by Lis-Marie Liden

If you were to see me you wouldn’t know most likely that I am living with chronic pain. There are many different kinds out there and it’s not always visible, and mine is not the worst by far, which you’ll learn about in this uncensored piece. I’m not sure if it matters, but I was born ten weeks prematurely. My knee sockets are underdeveloped and in turn, aren’t holding my kneecap safely in place.

This might be why my very first dislocation happened when I was just nine and as such my knee never stopped being a constant threat or fear. I have lost count of how many times my kneecap dislocated through the years. That alone is bonkers, and I put it back in place each time resulting in further damage.

An uncensored insight

I have had eleven surgeries in total, six of them on my knee, just to function, not even to make me prettier. Often people look at me with shock over the amount I’ve had, I look at them in the same way over the fact that they’ve had none. It was never so much a discussion or a choice when they were in the plans, they were all there to fix something that was hurting, growing inside or not working properly or completely broken.

For many years I lived with a very fragile damaged knee not knowing what to do. Until I went to the UK to work fresh out of school and I slipped on milk in the kitchen of the hotel I was waitressing at, dislocated my kneecap badly and was rushed to the A&E. A few years after returning home I had my first big knee surgery, don’t ask me why I waited so long.

The Orthopaedic doctor was shocked and asked β€œWhat have you done?” And after me explaining his face dropped. How had I just walked around with this major cartilage damage for years? The uncensored answer is that you get used to it, and you find tricks to aid the pain and aches. I was younger then, muscle could be built easier so that helped too. I was told after my knee surgery that I would have to strike running off my list, it wasn’t ever going to be possible again. And to this day, I still can’t run without it hurting badly.

With knees, once you start digging in there it feels like another area will need maintaining. So I had four keyhole surgeries to clean it up when the meniscus would get frayed.Β But then a few years later the chronic pain became unbearable all of a sudden. I was asked with only minutes to decide what I wanted to do. Leave it and bare with or risk having to have a very early knee replacement. You see, I was offered a groundbreaking knee implant to β€œresurface” part of my knee joint. But if it would have been rejected by my body I would be looking at a knee replacement no matter what. And knee replacements don’t last forever, meaning the earlier you start the more of them you’ll have to have throughout life.

This second big surgery was successful, and for about 3 years I was blissfully pain-free.Β Until that familiar, uncensored, guttural ache crept back. And that’s where we are today. I have yet again been advised to bare with the pain until I can’t anymore. Six knee surgeries in total, the chronic pain remains and I am taking it as I go.

On occasion, this makes me very sad, and it makes me feel β€œless than”. It’s not hurting the same every day, but my knee hurts every day. It’s hard to explain, but when you’re walking you normally don’t think about your body, you don’t think about what your joints feel like or if the next step will be solid. Almost every step I take I feel my knee, I can best describe it as a sharp rusty metal ring around my kneecap or a sharp stabbing kind of pain.

Surgery

Discomfort aside, all my years of accidents resulting in dislocations, tripping, stepping wrong, holding the door open with my foot or slipping on ice, all of these times have left me with anxiety, fear and flashbacks. So when it’s crowded or loads of wet leaves on the ground, I will have an internal struggle, I am reminded constantly.

Some nights the chronic pain is so severe that I can’t sleep,Β  and I have a loss of sensation on part of my outer lower leg, the nerve must’ve been damaged. And the scars are right there, all reminders. But I am so glad that technology is amazing and always getting better, so one of these days I might be even closer to a pain-free spring in my step.

I had a moment on a bus a while back. I had been to the gym doing my physical therapy as well as some boxing to remind myself of what it’s like to do fitness. Well, this lady on the bus started telling me off because I should give up my seat. This particular day I was in a fair amount of pain and my knee was overworked from the gym. The seat next to me was empty so I proceeded to tell her that the seat next to me was free and that she was very welcome to sit there.

She continued to tell me off and I hate to use my injury as an excuse, I hate that it’s limiting me, but for once I stood up for myself and told her exactly how it was. And we bonded, believe it or not, she had fairly recently had a knee replacement. But this is the problem, I don’t look like I might have chronic pain. Or that I just really need to sit for a second.

I don’t moan when it hurts either, I remember a former colleague of mine saying something that stuck with me but annoyed me so much. β€œYou must be fine because you’re not complaining about it”. β€œSigh”. Once in a while do I mention it, especially if it’s really bad and maybe I look weird massaging my knee or taking tablets, but when you live with chronic pain, you learn to cope, for some, it’s close to impossible of course. I know I probably have nothing compared to many.

Crutch

But it’s not all bad, and I take pride in the fact that I have done something good with it and that I am still trying my best to stay active and healthy. Something good from all of this is that my slightly broken self has helped doctors and other patients.

Through all of my surgeries, I have agreed for doctors to show and teach others about it. I have been part of studies and trials. And some people have even reached out to me to ask about my journey and this is amazing. And lastly, I’m a freaking warrior, I have fought hard to be me, titanium screws, scars, pain and all!

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