Not being able to go to school, no parties, medications, hospital appointments — all these things are a part of my normal day living with chronic pain.
I can’t help it. It’s not my fault I have chronic pain, and a lot of the time what I need to get through the toughest days are my friends. Sometimes, though, my friends don’t understand that just because I’ve been going through this for two years now doesn’t mean it gets any easier!
Here are 12 things I wish my friends knew and understood about my life with chronic pain.
1. I’m still the same person I was before all this happened.
Yes, I may now use a wheelchair and crutches and spend a majority of my time in the hospital, but I’m still the same person who has been best friends with you since playschool! Please don’t treat me like a different person.
2. I can still text and talk on the phone.
I may not always be up for a long conversation, but most of the time I’d love to hear from you. Simply hearing the gossip from school would make my day!
3. It’s OK to ask how I’m doing.
I’d actually appreciate to know that you care. I may rant or cry about complications, doctors or hospital stays but just to have you listen to me and give me a hug when I need one means the world to me.
4. Invite me out places with you.
I may not always be able to accept, but if you give me a few days notice I can save up my energy. I understand it’s annoying when I cancel plans last-minute, but even just to come over for a cup of tea and watch a movie makes me feel less isolated.
5. I know I’m not a “normal teenager,” but I try my hardest.
I know that I spend more time in the hospital than at school, but when I do manage to get to school please don’t make a big deal of it. Just treat me like everyone else. All I want is to fit in and be like you.
So next time you’re getting ready for a disco, let me know. I may not be able to go out, but I’d even enjoy just to be there, helping you do each others’ hair and makeup and enjoying the company.
6. When I can’t go to school, I’m not at home being lazy.
Most people think on days I don’t go to school I’m at home relaxing, enjoying life or avoiding a math test. But the truth is, on these days I can’t get out of bed with the pain! I’m usually in bed crying, ringing my consultant for an emergency appointment or trying anything that might ease the pain. I would do anything to be well enough to go to school.
7. I still love football!
I’ve played Gaelic football since I was 5 years old and the fact that I may never play again breaks my heart, but it doesn’t mean that I’ve lost my love for the game! Do talk to me about the game that was on at the weekend — don’t think I never want to hear or see the game again. It’s been a huge part of life so far and always will be. Wether I’m playing on the field with you or being the team’s water girl, I’ll always love football!
8. I tell you everything — well, nearly everything…
I love talking to you and having someone to talk to when I’m scared or worried, but I don’t tell you everything because I don’t want to scare you. Like that time after surgery I stopped breathing properly, or how I needed to relearn how to control my bowel and bladder. I didn’t want to scare you and quite simply I was embarrassed! I hated being connected to wires and drips and having everyone do everything for me. I felt like a little child and couldn’t bring myself to tell you that everything wasn’t OK. So if I’m ever upset and you can’t figure out why, remember I may not be telling you every little detail.
9. I’m a professional at wearing fake smiles.
I get up, get ready for school and put on my best fake smile. Like how you put on your jacket everyday, I put on my smile. It helps me stay positive and makes it easier and less awkward for you if I don’t look like I’m being stabbed in the back every few seconds. My smile is my favorite accessory.
10. The simplest things can be a major achievement for me.
I was asked to write an essay for school called “I skill I am proud to have developed.” I spent hours telling myself I have no skills and I’m barely able to walk, when really the skill I am proudest to have developed is walking! After not being able to walk for eight months, I learned to walk again with the help of my amazing team of physiotherapists, occupational therapists and doctors, and to say I am proud of myself is an understatement. But when I tell my friends and classmates this they look at me as if I’ve got two heads. They don’t realize this achievement is like climbing Mount Everest to me. This hurts me deeply as this is the third time in two years that I have had to relearn this skill. They don’t realize the amount of effort, energy and pain I’ve had to endure to be able to take a few steps. How frustrating it is when your physiotherapist has to physically lift your leg forward because your leg won’t step forward on its own. So when I finally manage to take a step on my own, please try and understand why I’m so happy and proud to be able to do this.
11. There are good days and bad days.
This goes for most people but especially people who suffer with chronic pain. There sare days when I feel like I can do anything — go to school, go to music class, do some studying — what most people would classify as a “normal day.” Those days are great and I go to sleep every night praying, please let tomorrow be a good day! But there are also bad days, and those days can range from me feeling a bit sorer than usual to not being able to get out of bed. Sometimes if I do too much, than I can expect to have a “bad day” the next day, but other times they come out of nowhere. These days I try my hardest to keep going and I wear my fake smile, but it can be really exhausting. That’s why when I’m having a good day, I make the most of them.
12. “How do you have this problem? You’re only 15.”
I have been asked this question millions of times in the last few years, not just from my friends but also from doctors and nurses. Yes, I do understand it is very rare for somebody to have needed two discectomies by their 15th birthday, but telling me that “Your granny has this problem” or for my doctor to tell me “This is what you’d expect to find in an 80-year-old” doesn’t make me feel any better! I realize my back is not normal for a teenager and that my grandad’s back is probably in better condition than mine, but I can’t help it. It may be rare, but it is very much real and I’m the one who has to live with an “80-year-old’s back” every day.
I’ll forever be grateful for all the love and support my friends give me, don’t get me wrong, but I wish they would just understand that everything isn’t always as simple as is seems. My life is like a movie — a lot happens behind the scenes.
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