Dear Disease,
You and I have been together for a while now, and I think it’s time I was honest with you about how you make me feel. We really have been through a lot together, and I don’t mean to apportion blame... but I think you are overdue a bit of a reality check.
I'd firstly like to remind you that in no uncertain terms, you are the principal and most relentless interference in my life. You are the single most infuriating thing I've ever experienced. At least since my corner-shop stopped stocking those big jars of Nutella. Much like that little bit of curly hair in my fringe that just NEVER sits right no matter what I do, you are pretty much a daily irritation. You call yourself a ‘chronic illness’ and it’s a fairly apt description. You’ve been a relentless pain in my neck (and everywhere else) since day one.
I'd love to be able to say I was fine before you came along but I suppose I really couldn't say that with complete honesty. I was internally all askew and I guess I always felt my body wasn't quite like other bodies. Some things just didn't seem to make sense. I don't mean to blow my own trumpet, but in my youth I had a fairly decent figure, I was pretty fit and active and could even occasionally look at myself in the mirror for more than 60 seconds without wincing. I took endless photos of myself and my loved ones and had lots of fun in amongst all the hard work of college and work, and more work.
After you came into my life the photos dried up. The mirror and I became distant, and all that fun was swiftly replaced with completing endless crosswords in-between all the vomiting, shivering, crying and despairing, wrapped up tightly in hospital sheets.
If you recall we were first properly introduced when I was in my mid-twenties, but we’d later come to realize you’d always been hanging around since I was a child in some way or another. When you hospitalized me (AGAIN) at around 26, it was then I first heard your name and a little bit about you. I was confused, angry and devastated all at once. The doctors told me you were called ‘Crohn’s Disease’ and that you were incurable. The idea that I would be stuck in this toxic relationship with you forever seemed almost too much to bear. I didn’t choose you, you chose me. Like some awful arranged marriage where I was destined to live my life with you whether I wanted to or not. Since we met, you’ve put me through so many hospital visits I’ve lost count, you’ve caused me to have parts of my bowel cut out, you’ve left me with scars, you ensure I’ll be on medication for the rest of my life and you routinely require me to have cameras inserted down my throat and inside my colon. You’ve investigated my rear end so often I can’t keep track, and that was just the weekend. You can be such an all-consuming disease, particularly when I’m in the midst of a flare up. There are times when you ensure almost every single part of me is in pain. You make even my HAIR hurt, how is that even possible? In fact I’m not even angry about that one, I’m almost impressed.
Under normal circumstances (whatever they might be), you have to be factored into my plans every day, and in everything I do. Talk about possessive. I wake up thinking about you and I go to bed doing the same. In waking I have to plan my morning routine around what state you’ve put my bowels in upon getting out of bed/and or having breakfast. In going to bed t night I have to consider my real-life-human-man-partner and if my incessant trips to the toilet will keep him awake, or whether I’ll be able to get closer to him than just a cuddle without feeling nauseous.
I know I may badmouth you sometimes, (ok a lot of the time), and I’m sorry for that, but I want you to see just how hard you have made life for me. I suppose I love and hate you all at once. Bit of a conundrum aren’t I? Like most people, there are many things in life I love and hate in equal measures. For example I LOVE Nutella, but I HATE how small and awkward they make those jars – how are you supposed to get a normal sized knife in there?! It’s almost like they are FORCING you buy more…
At first, and for a good while, I hated the sight of myself with you. You destroyed my body and mind. You left me with scars, and internal and external irreparable damage. You caused me so much stress that I suffered constant pain and continuous pounding headaches. The medication you insisted I take made my hair fall out, gave me ulcers, made me pile on pounds or shed countless weight almost overnight. In those moments I watched parts of me drift away and felt less of Me. Less of a woman.
You were the worst relationship I ever had.
But we must persevere. It took me a long time to face the fact that I was never getting rid of you, but when that finally sunk in, my attitude towards you changed almost overnight. I realised I had to accept you as a part of my life and begin to make an attempt at living in harmony, rather than relentlessly trying to fight you. It all became just too tiring. I didn't like the idea of you taking away my independence, so I eventually resolved that I didn't have to let you. I had to take a bit of the control back. I had let you have the upper hand for too long. There was no equal footing in our relationship because you held all the aces. You would decide what we did and when we did it, whether or not I went to work, and you had the ability to hospitalise me at the drop of a hat. You were toxic for me. I came to see that if you had your way I would be resigned to my sick-bed watching yet another Breaking Bad marathon, in hospital, or worse, the morgue. I was playing a dangerous game of denial I had no chance of winning. You have changed my life in immeasurable ways, but not all of them bad. Having you as my illness has forced me to open up and allow other people in. It’s cemented my relationships with the best and most treasured people in my life, and reminded me how lucky I am. You’ve allowed to me to remember just how much I am loved. Anything that has the power to be felt over agonizing pain can’t be all bad. You’ve reminded me to love, and show that love every day with a ferocity that knows no bounds.
Having you in my life has also made me acutely aware of what I can achieve if I set my mind to it. If I choose to work alongside you and not allow bitterness and anger to eat me up, I can gorge on a determination that's hard to fake. When your own body tries to set limits for you, that's when your mind puts its proverbial foot down and forces you to take action. I've surprised myself in what I can, and have coped with and what I can do when I really push myself.
You have also taught me an amazing amount about my own body. About bodies in general for that matter, and how incredibly they function. (Or not as the case may be). It's been a thrilling adventure for a woman who was once squeamish at the sight of her own nail breaking. I've been through so many toe-curling procedures and had so many implements inserted in so many orifices I've just had to get over that girlish nausea. And that was just the weekend.
You still interfere a LOT of the time, but when I’m able to be the 'old me', even with you tagging along, I absolutely relish it. Anyway, let’s raise a glass of nutritious (and rancid) smoothie to the rest of our lives together. You may make me feel weak but I am stronger than you think and don’t forget it. I realize now it is within me to maintain ‘me’. No one can cure me of you, and no one can tell me how to feel. It’s up to me to decide if I want to lie down and be beaten or get up and embrace the good stuff.
I love and enjoy my life despite you. Now who has the last laugh? Yours always, in Nutella,
Kathleen x x
