I don’t even remember the moment I was told I would be burdened with debilitating neurological pain for the rest of my days. In fact, in so many words, I don’t think I really have had it directly hurled my way.
That tends to be because medical professionals like to dance around the fact.
‘Oh, a young girl with her whole life ahead of her. How do I break the news that she’ll never heal and will in fact be stuck with this monster that’s going to impact on and seek to control her life forever’. But the thing is, when you go through trauma never expected in anyone over 40, never mind 17, you tend to grow thicker skin and a stronger mentality. You’re immune to the misfortune no matter how many challenges and heavy despondencies are brought to the surface, and it only makes you more determined to never give up, to strive for better, and defeat the invisible enemy.
It wasn’t until I saw my consultant just last year that the harsh truth was put on a plate for me to swallow. That there is no cure. There is no way to reverse the damage done. You’ve tried every possible relief on the agenda and nothing’s worked, therefore now your only choice is to adapt to this environment. Not that it wasn’t new news. Not that I wasn’t already aware. Not that I wasn’t already taking those steps. Various research over the year as you take your rare condition into your own hands does at least allow you to accept the reality in your own time, at your own pace. It lessens the blow to the face, per se.
Taking it into my own hands is exactly what I did. What I do. Allow it to become part of me but refuse to let it define me. It’s tough coming to terms with your new identity, not recognising this diminished shell of yourself, feeling like a fraud and trying to maintain that semblance of a normal life whilst recognising you’re not as invincible as you used to be and you need to put those limits into place.
Adjusting to a chronic disability isn’t swings and roundabouts. Far from it. There’s so many elements that affect your state. Physically, mentally, emotionally, socially, intellectually. The list goes on. Being a slave to your pain is not a fun concept and it is difficult undergoing so much uncertainty about the past, present, and future. It’s exhausting, and gruelling, and disconcerting. There’s many of days I’m throwing a pity party for myself, having to dig my way out and still having those drowning thoughts at the forefront but most of the time, I’m just me. Trudging my way through life as an ordinary woman in her twenties. Not a casualty to chronic illness, not an inspiration, just simply me.
I always feel like there’s this underlying pressure to constantly possess a positive outlook when you’re fighting an everyday battle. It is impossible to stay upbeat and cheery all the time, even for the wellest of people, but it can be done. Chronic illness is not the end of the world and we need to stop tiptoeing around that fact like sufferers are just a delicate fragility.
It’s easy to paint on a false facade of buoyancy but it’s easier to accept it for what it is. You can’t change anything that’s happened to you and your only choice now is to face it head on and stop living in denial. The first thing that allowed me to be properly resilient and upfront, is to be honest with myself and my diagnosis. When you’re hyper aware and conscious of your thoughts, your attitude, and your bad habits, it allows you to be manageable and allows you to keep that control.
Instead of dwelling on the bad, tell yourself you made it. You did it. This is your second chance at life and you’ve got to enjoy the dimensions to your newfound existence. It’s okay to feel down but a balance on that perspective means you will assign yourself to have good days and embrace them for what they are.
Appreciate the small victories, voice them out loud. Try not to fixate on the losses and focus on the gains. And most of all, think about how much you’ve learned on this journey. About yourself, about others, about the world around you. For me, I’ve learned so much about what genuinely matters and what can be disposed of. People who appreciate and support you for who you are, matter. Fair-weather friends and family, don’t. I’ve learned that the little things like stumbling upon a song you can’t get enough of, watching the sunset, curling up to watch a trashy film and laughing all the way through, is what’s worth living for. I’ve learned that there’s many others in the same shoes and to discover an online community and develop connections with those who get you and what you’re going through, has remarkable value. I’ve learned because I’m more alert in every sense, I’ve become more attuned to the importance of finding your true self.
Look closely, and you’ll probably recognise you’ve grown into a wiser person without even realising. Just because you won’t get better, doesn’t mean you can’t become better.