A lot of people ask me one question in particular when it comes to living with chronic pain.
How do you do it?
Or similarly I hear-
I don’t know how you do it.
I don’t know how you live like this.
The sad reality of the fact is, that chronic pain is my life now, and I don’t get a choice. Well, I guess I could curl up in a ball and retreat into the depths of my very comfortable bed for all time and never be seen again, but that’s not much of an existence now, is it? I had big plans before getting sick, and as much time as it’s taken me to think this way, chronic pain isn’t the end, it’s just the start of a more difficult chapter that requires me to discipline the way I think and perceive my everyday life.
The thing about chronic pain, whatever form it comes in, it’s chronic, just as the name would suggest. There’s no respite, no walking away, it’s your body and it’s out to get you. You’re essentially a prisoner, but honestly, rattling against those bars and wailing isn’t going to do anything. I’ve tried it. You want to give up, give in, just want it to stop. It’s common, and, more often than not, it leaves us feeling isolated, hopeless, and depressed. The thing is though, you get one life, and caged in a body that isn’t very co-operative or not, that’s it… well as far as I know anyway. Life is short, cruel, brutal, and unfair as the very fact that we have chronic pain in the first place might suggest, but it’s also yours. It’s yours to do with what you wish, and that my friends, is where your biggest weapon comes into play, and that is mindset.
The thing about mindset is, I know it sounds like bollocks. Like cliché, inspirational music, life coach type bollocks. But it does work, but only if you work with it. Mindset can be the double-edged sword that will either save you or slaughter you in the end, in all things, but especially when it comes to dealing with pain and achieving your goals.
One of the honest reasons I set up my own chronic pain support group (You can find it right here) is because I was sick of listening to the negative out-pour. I mean, if all I did was sit about in chat rooms twenty-four seven complaining about my pain, I’d probably feel it five times worse and my brain would become a cesspit of why me!? The other thing is, it doesn’t make the pain go away, it doesn’t even make it feel less. So, all that does is serve to make me feel like shit, when I already feel like crap.
That’s why I stopped being negative (the majority of the time, I still, as we all do, have times where I want to rip my hair out and stamp my feet)… because in that mindset it wasn’t the pain making me miserable, it was my perception of the pain, about how it controls my life and stops me from becoming the best version of myself.
Don’t get me wrong, we all have bad days, days where you wanna scream and cry, and it’s super important that you feel heard, especially with those conditions that doctors are reluctant to diagnose, or in conditions rare like mine. Those days are important, and worthwhile, provided you in fact pick yourself up afterwards with a new determination to keep going. It’s easy, when you’re in pain all the time to change as a person, to become negative, to stop enjoying simple stuff like going for a walk on the beach in the summer because you’re afraid of flaring up the next day, it’s easy to say well I’ll never do this, or I’m never going to be able to achieve that. The thing is though, if I’m having a good day and go into my support group to find everyone depressed and negative, it rubs off, and it ruins my high. It’s one thing having a breakdown in Miserytown, but it’s another to set up shop and live there.
My first step, once diagnosed, was denial. Great big waves of it. I kept on going just as I had been before, and it was the worst decision of my life. The Doctor put me into therapy and told me that suicide rates in people with chronic pain are pretty damn high, which when you think about it isn’t hard to believe. I’m not saying that therapy doesn’t work for everyone, but I stopped going pretty soon after, mainly due to the denial actually. I was dealing with a lot, and I didn’t want to go into a room where the therapist was essentially assessing whether I wanted to end my own life. I found it insulting, even in the beginning, and even at my lowest point, because I was determined it wouldn’t change me.
Unfortunately, I came to see, though never felt the need to return to therapy, that my life had changed. Whether I wanted to accept it, whether I wanted to acknowledge it, the truth remained regardless. I felt guilty with this admission, as every single person I’ve ever known to suffer with these types of conditions does. We’re not bleeding, not flat-lining, so why the hell can’t you load the dishwasher, get the laundry done, hold down a full-time job and support your partner, your children even, like you’re supposed to… right?
After denial receded a little, and honestly it took years before it entirely went away, I became focused on what I would never be, on what I would never do. It made me depressed, made me miserable, and made me wonder why I’d tried so hard to get a damn degree when my entire career path had been so spectacularly derailed.
I never would have been an astronaut with or without chronic pain (I don’t think spacesuits come in fluffy), but this didn’t bother me, because I’d never wanted to be an astronaut. I’d never considered it something I’d do or try to achieve. So then came the fact that I needed to really step back and take a look at what I wanted, really wanted, and rather than focusing on what I couldn’t do, focus instead on how I could reach my goals with chronic pain. It also meant looking to my passions, to the things I never would have pursued because they weren’t sensible, weren’t good for bringing home the bacon… because I suddenly realised that it was about more than money. This thing I’m going to do for the rest of my life… it has to make me want to get out of bed in the morning, especially with chronic pain, so it would have to be something I loved.
If it weren’t for this mindset shift, I wouldn’t have ten published titles because I wouldn’t be working in a realistic way that allows me to manage my conditions, and I never would have considered being an author. It was nuts, this dream I had, of being a writer. Totally insane because everyone knows that writers don’t make real money, or at least not quickly anyway. It’s then that I realised something entirely revolutionary to the way I think.
The thing that ruins our happiness isn’t life at all, it’s how we think it’s going to be. Our expectations are that which lead us to be disappointed and depressed.
It’s often said, that if you can believe it, and conceive it, then you can achieve it, and as corny as that is and as much as it truly makes me cringe, I have found that to be largely true. Belief in a goal, and determination, and a positive outlook are just as important as research, talent, and luck when it comes to success. If you really want it, then you’ll find a way, even if you have to sacrifice everything else to get it.
I think another point to make, is that your definition of success shouldn’t be based on what other people view as success.
Fast cars, island resorts, massive manor house, the dream job and piles of cash that explode from everything you touch, sound familiar? It’s the dream the majority of us grow up with, but really, it’s something we’re fed, this vision of success. Success is personal, highly so, and so I think a lot of people with chronic pain would be able to maintain a positive mindset if they stopped looking at what society deems as success, and what they want their success to actually look like.
It’s important to know that you still have control. This thing, ugly and a pain in the ass has come into your life, unwelcome and savage, but you still have control. It’s still your life. I’m not saying ignore the condition, that’s not what taking control looks like, and is guaranteed to end you up in a flare cycle you’d probably rather avoid. What I am saying is you can find balance, and that is your power. You can research your condition as much as you can, you can work out your own pain remedies, work out what helps you personally when you’re hurting. You can set your goals at the pace that suits, and work to them in a way that works for you. You don’t have control over the pain, but you do have control over how you perceive it and whether you let it defeat your ambition.
It might take longer, it might be harder, but if this goal, whatever it is, is something you truly want, then find a way. Do what you have to, but take control of the situation, and make a plan that accommodates for all aspects of your condition.
Doctors can give us as much advice as they want, but let’s be honest, they don’t live with this shit every day, and saying Oooh be positive is way easier said than done. It’s taken me time, and it takes everyone time to grieve the life they’ve lost, to change expectations and re-calibrate to this new life we’re forced into living but let me say it again… it’s still your life.
Chronic pain sucks, but instead of letting it change us entirely, let us instead change the way we go about things, the way in which we view this version of success that the world has forced upon us, and look at what will truly make us happy, and what is a realistic way of getting there rather than writing everything off as hopeless.
You might have chronic pain, but you’re still you, and you still have all the potential in the world, it just might look a little different than you expected, and the journey might be harder or take longer.
Still, that doesn’t mean it isn’t worth doing.
Everyone, chronic pain or not, deserves the chance to chase their passion, their ambition, and I think it’s especially important for people with chronic pain. These diseases, they might take away your ability to walk, your ability to have children, your ability to sneeze without peeing yourself… but at the end of the day, it can’t touch your dreams or your desire to pursue them unless you let it, and that’s the reality.