I think like most people, I am guilty of living in some denial and regret in certain aspects of my life.
When it comes to a chronic illness, it’s just that CHRONIC. It doesn’t go away, it can’t be cured only treated and those treatments change and sometimes fail. It takes time to become comfortable with what you have, what is wrong with you and how you go about living with it.
I’ve always embraced my illness. I figured the sooner I accept it, the better I will feel right? I was half right. While I did accept my illness and how it was going to always be in my life, I didn’t always like the fact that it was always going to be in my life. It’s difficult to come to terms with that; the long term, chronic part of IBD. Not that any physical aspect of my illness is particular pleasant but it’s the people I’ve met; the resilience, bravery and positive humour they show that keeps me going; it’s what I strive to emulate.
So you get use to denying how you feel. You tell your doctors you’re happy to go ahead with new treatments when previous ones fail: because your body is immunosuppressed or it’s just plain useless or has it in for you. You don’t tell them that you’re angry that this condition picked you – because it’s not genetic, I didn’t give myself this illness, ITS NOT MY FREAKING FAULT! – or that you’re tired of them trying new treatment after new treatment. You hope and pray every time you do start a new treatment or drug that this is the one that works. That it is the one that gives you some relief from the pain and / or symptoms you’re experiencing. You hope you don’t live to regret your decision to take harsher and more potent medications.
I don’t support this living in denial or the regret of what could have been, I try to live in the moment and remain positive. I did this more than ever during my most recent hospital admission where they ended up taking my colon and giving me a ileostomy. But even with that, I have to talk myself into believe I made the right choices and I am happy with how my life is being lived. For the most part, I convince myself of this. I accept my reality and move on, do all those things a ‘a normal and healthy’ person can do. But even I have my limits. And my triggers.
One is my actual supply of ostomy appliances. Their smell fresh from the box reminds me of all that I have lost and what I need to do for the rest of my life – change my appliance every other day and empty it 5-6 times a day. It doesn’t hold me back but it makes me stop and think, I remember living with a colon for so long it’s still very odd to not have it. And once my body is healed from this surgery, will my mind be healed? I doubt it. It is so very strong my doubt; I deny myself the feeling that this is not okay and that I’m only 28 for Christ sake! This is new and scary and I don’t know how long that feeling will last. So I push myself to be okay with it all, not deal with the fact that I am scared because I’ve faked being okay with this to every one: I don’t want to let them down, let their opinion of me change, of not being so brave and courageous. I don’t want to be a failure to them.
I will occasionally have moments where it is too much. And learning how to deal with them is an uphill struggle, a steep learning curve. But that is okay. I need to hear it’s okay.
But.. I wouldn’t want to live without my denial or regret. I think those two emotions keep me fresh. Let me explain; if I didn’t feel a small twinge of regret and what if and wondering why I was still in agony, I would never have sought medical attention in August and my diseased colon would have killed me. There is no one set way to solve the problems that arise with IBD and every patient is different, even though we do follow certain patterns. If I didn’t suffer with some sort of denial; I wouldn’t be human. I would be a robot.
Sometimes you just need to be reassured that feeling those ‘negative’ emotions is okay. It’s a part of life, a part of being a human and it’s part of this recovery. It keeps you soft in world where it is so easy to be hard and cold.
NB: Originally posted on Safe Space UK here.