Finding out you have a chronic illness is tough, it’s really, really tough. Some days are better than others, some months are better than the last but always lurking beneath the surface is an internal battle that most don’t understand, but I’m here to tell you that I do. I understand and I’m going to give you the one thing I know you don’t want but you’re getting it anyway, I sympathise. I know that goes along the lines of the forbidden words, much like “and on a scale of 1-10 how is your pain today”. I’m sure you could hear that eye roll through your screen. But I truly do. I’m sorry if you have a chronic illness, I’m sorry that you’re hurting and I’m sorry that times have been so difficult because I know they have been. I’m here today to share some things with you that I find help in my own battle. Some tricks of the trade I’ve picked up over the years.
I’m slightly terrified and most definitely anxious to be sharing my story with you all today. Ladies and gentlemen, unicorns and mermaids, I welcome you to my chronically fabulous story.
Let it hurt.
Even now, after years of practice, I sometimes just don’t have the energy to hide that I am devastated by this illness. It’s tough having to admit that maybe you’re not as strong as everyone believes you are but I’m going to let you in on a secret. That big tough warrior who can handle anything and everything thrown their way, is a monster of your own creation. Believe me, I know. I had one myself. She was pretty tough and also entirely imaginary. Thinking everyone wants you to just take on board this life altering condition and cope without hitting a bump or two is your own expectation and I know how utterly heart breaking it is to realise that it’s just not possible. Living with a chronic illness is hard, there’s no two ways about it. There’s going to be days where you feel like you just can’t go on, like the pain and the hurt is just too much. You’re going to doubt yourself because you think that the warrior who could handle anything doesn’t exist. And you’re right they don’t. But you do. A true warrior picks its battles. On some days it will fight with all its might. It might go weeks and weeks fighting tirelessly, seeming never to give up. But there will come a day when the warrior is tired. And when this happens, they know it’s okay to lie down and just simply have a day. No changing the world, no big adventures. They know it’s okay to take off their armour and on these days, when the tears finally come, let them. Let yourself grieve the person you were before the illness took residence in your body. Let yourself cry for the sleepless nights and the painful days, it’s okay to let it hurt, it doesn’t make you weak, it makes you human.
As I write this I’m letting my own tears fall. Without shame or regret, I’m allowing my vulnerability to show because it’s what makes us wonderfully human. Right now, I’m having a particularly rough patch. Things changed in my chronically fabulous battle and I’d be lying if I said I wasn’t broken hearted. I’ve fallen down and I’ve hit the ground hard. But this time I did something I never have before. In all my years of illness I’ve never taken control of the emotional side because it’s always been just too painful to open that door. But I allowed it. I felt and I continue to let it hurt because I’d be doing myself a huge injustice if I did otherwise. I’m sore and I’m tired and I’m just not in the mood to do anything else other than hurt right now. But this won’t last forever and when I’m ready and my feet are firmly planted on the ground again, I just know I’m going to run faster than I ever have before.
Tuck your illness carefully in your pocket, take a breath and take your next step.
Admitting there are things you can’t do because of your illness is admittedly frustrating. And in the beginning, most find ourselves to be rebellious. Living in spite of the illness, living right up until the next consequence of an action you knew was only going to end one way. I was the worst for this. Living each day trying to spite the illness that had decided to up and take residence in my body, without so much as a pre-lease agreement, the audacity. I lived fully, which is entirely acceptable, however, I was pushing myself too hard. I knew it and I continued to do so because I was adamant that no illness would control my life. What I didn’t realise at the time, was that I was in control all along. It took a lot of unnecessary extra tiredness and a pretty rough flare up for me to realise something had to change. I’d be lying if I said I came to this conclusion alone, I truly am just that stubborn so it took a good few nudges to push me in the right direction but I got there. I realised that I could live a perfectly happy, full life, with this illness by my side, rather than racing through my days trying to leave it behind, because no matter how fast I run, I’m just not quick enough to outrun the inevitable. So I made a choice. My illness and I lived the life I had always dreamed off and it was so much more wonderful than I ever could have imagined. I travelled, I conquered and I lived, all with my chronic condition tucked carefully in my back pocket, reminding me daily, that I am strong enough to live the life I want. Yes, I have bad days. I have flare ups and they’re rough. Times aren’t always easy and my life may be far from perfect. It’s messy and filled with hospital letters, medication and enough tears to fill an ocean. But it’s real. It’s not this façade I was living trying to hide from my pain, my life is pure and it’s wonderfully real. My illness is part of who I am and it’s helped shape me into the person I am today – someone I’m actually pretty proud of.
One of the most difficult aspects of being diagnosed with a chronic illness is that key word, “chronic”. For each, that means something different. In my case, however, this word means currently incurable. Can be managed so I can live a semi normal life, absolutely. But as of yet, there’s no cure for inflammatory bowel disease. Nevertheless, I chose not to allow this to dampen my spirits. While there may not be a cure, nobody said that meant a life sentence. I realised not so long ago that if I treat the illness like the villain in my life, then that is what it will become. So I chose to pick it up and tuck it carefully in my back pocket, carrying it with me as I lived my life. Living with my illness, rather than in spite of it and I’ve got to tell you, it changed my life for the better.
Don’t be ashamed to talk about it.
Life is too short to pretend like you’re okay when you’re not. I’m not talking about screaming at strangers on the street that you’re having a bad day, I’m talking about being honest with yourself and those around you. If you’re having a bad day and want to be alone then that’s okay. But if you’re alone because you’re ashamed or feel guilty for sharing your pain with others, then I encourage you to fight past that. Fight past that guilt, I know its hard, believe me, I understand how difficult it is. But push past that insecurity and talk about it. Trust me, the weight that gets lifted from your shoulders when you’re finally honest is unbelievable. That guilt you feel, it’s crippling. That feeling that you’re constantly letting people down is heart breaking. But when you begin to understand that this isn’t your fault and that hiding from your true feelings and bottling them up is an injustice to yourself, you’ll be free of so much internal pain and suffering. Those around you will understand, they may not fully understand the pain you’re in and they may sometimes get it wrong but nine times out of ten, the truly do want to help, they just don’t know how. You are allowed to be honest. If you’re angry about your situation, you are allowed to be angry about it. Because its not easy, its really, truly not. It’s hard and its scary and its so exhausting constantly battling with your own body. The physical side effects of your illness are enough, don’t let the emotional aspects cripple you too.
Years ago, the thought of writing a blog this honest about something so personal would have left me an anxious mess. I would’ve been doubting every word. Checking every sentence over and over again until I ultimately deleted the whole thing. As I’ve grown with my illness I’ve come to realise that when it comes to this? I call the shots. And if I want to talk about it, then I will. Don’t get me wrong, no one ever told me I couldn’t besides myself. So that sentence of rebellion was for past me – how about them apples 2014 Anna. I find that talking about it helps, typing out how I feel relieves a lot of stress and tension. It’s a personal coping mechanism and I actually enjoy it. Sharing this blog, especially just now, is a huge step for me. I’ve been really struggling recently since I had a development in my illness and I’ve had difficulty coming to terms with it all. Sharing this blog is like I’m finally admitting that this development is real. My circumstances have changed, times are tough and I’m allowed to feel a little trampled on. My pain is valid, my hurt is real and if I want to stamp my foot and glare at the sky, that’s okay for today. However, when the wind changes direction, all that’s left to do is simply adjust my sails. I’m heading down another path and I’ll be ready for this journey, just like all those that have come before. Down but never out, shaken but never broken, I’ve picked up my broken pieces before and I’ll be damned if I don’t do it again.
I’ve never wanted to be ordinary. Changing the world doesn’t happen overnight but among everything else I’m trying to do, I hope that if you’ve stumbled across this blog and you understand the things I’ve spoken about, I hope I’ve managed to help in some way. Your battle is never a lonely one, even if your shoulder to cry on is some Scottish lunatic in unicorn slippers and a Rangers top typing her own battle out on a laptop. You are never, ever alone.
And when you’re ready…live.
Despite all the hurt, I chose to live the life I have been given to its fullest potential. I am living and it’s wonderful. My life is full and most days, I’m so happy I could burst. Even on my rough days, there’s something to smile about and I can see it now. I fought so hard for my life and I’m winning. I have the best family and friends in the whole world, they’re the best bunch of lunatics I could ask for. They’re always standing close by, ready to reach out and steady me as I journey through life. They understand my need for strength and allow me the room to live my own life, but trust that I will come to them when I need them. My illness is never absent and I know it never will be, so instead of focusing on a life without it, I’m choosing to live with it. Instead of being angry at the world and frustrated that my life couldn’t have been different I chose to love and accept. I chose to look at the positivity this world has to offer and opened the door to a life of eternal optimism. After all these years and all this pain I still truly believe I can change the world for the better. I’m using my kind heart which has shown me love and compassion, acceptance and empathy, an understanding of the good and pure that lives buried deep in the roots of the world, alongside a diseased large intestine, that has shown me strength and resilience, its revealed that a bad situation can have a positive outcome if you’re willing to truly believe and fight. I’m using the best and the worst part of myself to be the change I want to see in the world. Each part of my body, both entirely different but equally as important, have shaped me into the person I am today.
I’m moving forward with my illness tucked carefully in my pocket and I’m truly excited for what the future will bring. This is my chronically fabulous life and I’m pretty proud of it.
“I realised; there is no shame in being honest. There is no shame in being vulnerable. It’s the beauty of being human.”