If you looked at me you wouldn’t know I had an incurable disease. I look like everyone else. Ok, maybe not exactly, I’m a
little (ok a lot) on the thin side, I’m often covered in bruises from millions of blood tests, and sometimes, if I’m lucky, you’ll spot me sporting a rather trendy hospital bracelet with my name on (in case I forget) and a gown that shows my bright red bum off to the whole world like I’m a baboon. Anyway, what I’m trying to say is that I’m not in a wheelchair; I don’t have to walk with crutches; I have all my hair; I have all my limbs; I don’t look a weird colour, pale or sickly; and I don’t have any disfigurements…so to the naked eye and to the world I’m not ill and I’m most definitely not disabled, which you would think would be a good thing right?
Most of the time it is! I am so grateful everyday that I can walk, jump, run, swim, and that I have the freedom to do the things that I want to do without being confined to a wheelchair..and I have to add that I have all the respect in the world for those who aspire to amazing things despite the preconceived limitations of their disabilities (aka ParaOlympians). But just because you can’t see my aliment it doesn’t mean it doesn’t exist. As a Crohns/Colitis sufferer I don’t want anyone to treat me differently, but I don’t want to have to walk around waving a sign saying “I’m ill…honest!” just so that people will let me into the disabled toilet without shaking their heads and muttering “how disgraceful, how dare that young woman use the disabled loo…there’s nothing wrong with her”, or maybe let me sit down on the bus when I’m obviously about to collapse through the effort of trying to stand up.
So as a long-term sufferer of Crohns/Colitis (still don’t 100% know which one, they’re now leaning towards Colitis) here are my confessions:
I know I’m a positive person. It’s a skill I have moulded from years of crippling pain, disappointment, broken promises and self hate. For most of my life I have lived a lie that has been so bloody convincing that I don’t really know what’s real anymore. If you were to meet me you would see what everyone else sees – a confident, happy person, who never gives up and never lets anything get her down. No matter how much it hurts, no matter how much I want to scream in pain, no matter how bad your horrible judgements because of my skinny frame or endless toilet visits, no matter the blood, injections and fatigue, I still manage to plaster a smile across my face.
You could spend all day with me and never notice that I am holding myself together with a tiny string of energy that is fraying and threatening to snap at any moment. I spend every day as a different person, a determined person, a workaholic, the sort of person who would never let anyone down, who won’t quit until the job is done and who gives everything 110%. I’m like a whirlwind in the office, and I guess my pet hate is lazy people. I never stop, my energy to others seems unrelenting, and my positivity in the face of so many issues seems to be endless. But inside I’m screaming as my body eats itself alive. If you were to look closely maybe you would be able to see the pain in my eyes, perhaps behind my blue eyes everything is empty? Perhaps if you stopped and really looked at me, pushed aside my over-the-top laughter, thick make-up and endless chattering, you would be able to see me my hands twitching with pain from arthritis as I attempt to scribble down an interview, or the way my body twitches as pain rips through my bowel or the deadness in my eyes as I try to cope with the face every morsel of food I ate for the past year has just ended up in the toilet bowl again.
Smiling so much can hurt. Living a lie every day takes a lot of energy and being positive when so many things are quite frankly shit is just draining. I don’t let many people see the real me. I guess I’ve never liked her. To me the real Rachel is ill all the time, she is weak, she is sick and she is not worth bothering with. The real Rachel is the person who crawls into bed and gives in to the pain and the fatigue. She is the side of me who throws up food quicker than it’s cooked. She is the person who is afraid of social events where people will see how little she really eats. She is the person who lives in track suit bottoms and baggy t-shirts, is covered in bruises from endless blood tests. She is the person who knows that feeling well will never really last, that the treatments will never really work and that it’s just a matter of time that my illness will kick off again.
That Rachel is the one I become on the night’s I arrive home alone, she is who I become when I unscrew that positive grin and put it to bed on my nightstand every night.
You could say there are two versions of me. There’s the Rachel that people see in public and then there’s just me, bare, naked and exposed. That’s the person people see when they visit me in hospital covered in wires and trying to hold back the tears. So now you know why I always want you to call ahead if you’re visiting – it’s so I can transform into the better Rachel, you know, that positive person you all know and love. She’s not for me…no, she’s for you.
Well she used to be….now the lines blur. I’ve been living this lie so long I might just be starting to believe that I really am as determined, hopeful and positive as she is every day.
Why am I confessing all this? I guess it’s because of what happened yesterday…
Yesterday I woke up full of hope, questions and enthusiasm, ready for my meeting with ‘Mr Miracle Hands’ my
life-changing (I may as well say life-saving) surgeon, whose amazing handy-work brought Winnie into the world and banished some of the evil disease that has tormented me for the past 13 years. I was almost excited to see this ‘wonderful’ man, who I hoped was going to be full of answers and solutions to some of the weird problems I have been experiencing since my Ileostomy operation nearly 12-weeks-ago. I guess I thought that he would be able to snap his fingers and every issue would just vanish in a puff of smoke, that he would smile sweetly, say “don’t worry it’s all over, you’ve suffered for long enough and that’s it.. you can live your life now. We will fix you and from this day on your only worries will be whether your bum looks big in an outfit or which weird combination of coffee, milk and syrups to order from Starbucks”. He said some things, but to my disappointment it was nothing along those lines.
I guess I should be grateful, since the operation I have felt better than I have ever felt – well, that is, ever since I can remember. The crippling pain that caused black-outs, screaming ‘kill me now’ in public bathrooms, and left me literally crawling up cubicle walls, is gone. But it has been replaced by something else…something so much further down the scale that most of the time I don’t even notice it, but it’s still more pain than most people could deal with on a daily basis. You see the complications, the infections and the scar bursting open following my life saving operation have left me with more problems than before. I was used to the old problems caused by UC/Crohn’s, but these are new, alien and confusing problems and pains that, honestly, I am finding bloody hard to figure out.
My hope had been the ‘miracle hands’ surgeon was going to have all the answers. My hope had been he was going to say “let’s take out that remaining bit of colon, I should never have left it in, it is far too diseased”. I hadn’t expected him to take it out there and then, but I had hoped it would be soon. When he cocked his head to one side like a sad puppy and said ‘at least six more months’ or ‘possibly never’ due to scar tissue, complications and risks, I have to admit something inside me died. I think the little flame of hope of living a totally normal life flickered and gradually burnt out. Obviously, me being WELL ME, I didn’t burst into tears or throw the all mighty ‘it’s not fair’ tantrum (believe me I wanted to), I think I made a totally inappropriate joke or laughed. In fact I even carried on doing it when he peeled back my wound dressing to reveal a very sore and oozy patch of skin that was like a scene from Alien, and expressed his horror that I’d managed to put up with such pain in the sweltering heat! I even made a joke when he declared he would have to put a THIRD stoma bag on it to drain the never-ending stream of puss:
ME: (something along the lines of) “ooh so your adding another tool to my tool belt!!!” (I’m sure he saw through my little act, I know my mum does (she always has)…
Anyway I couldn’t believe it A THIRD BAG!! I didn’t sign up for this. I signed up for just the one, when I signed that consent form and allowed this man to hack away at me I was under the understanding that their would be no complications. he would simply whip out my bowel, fit me with an ileostomy and that would be that…BUT NO!!! I should have known, I really should, nothing I ever do runs to course…my body screams DRAMA QUEEN!! I even joke to my surgeon that I am the most dramatic patient he has ever had – unfortunately he agrees! I was so desperate not to get another bit of plastic bagging attached to my skin that I wholeheartedly agreed when he said the only other option was to stick a knife in the over-granulated scar tissue and drain out the puss! Anyone passing the room at that point would have thought he was offering me a package holiday by the OH YES, FANTASTIC, PLEASE that was excitedly coming out of my desperate mouth. unfortunately he refused to do that, and I found myself whisked to another room, nurses buzzing around me, sticking one bag after another to my skin in an attempt to find one that wouldn’t make me look like Michelin Man once I had my tshirt back on.
Anyway, back to the surgeon. I quizzed him on everything. Now that they had my large bowel did they finally know what I had..surely they did? The truth was, after looking at the results he still couldn’t tell me 100% if it was UC or Crohn’s. He confirmed the results ‘swayed’ towards UC, but that it looked like they wouldn’t 100% know until they removed the rest of my colon, then it would be a waiting game to see if the disease attacked my small bowel…if so, it was Crohn’s Disease. What a fun game 🙂 I can’t wait to play that one, maybe we should put bets on it!
By the end of the appointment I had been called brave, tough and a ‘good coper’ – I didn’t feel any of those things. It must have shown as at the end of the appointment, as I was being whisked off to get my third bag plastered to my ever-growing tool belt, the surgeon grabbed me in a big bear hug and held onto me like I was being taken off to die. He told me how brave I was, how well I was looking, and how much I had been to stay so positive despite what I had been through. It was awkward but nice…despite everything that has gone wrong, the wonky epidural, the split-open scar, the infections, I would still, if I had to, trust this man with my life (even if he is a bit touchy-feely and holds my hand during appointments).
And after all this crap what did I do? I didn’t go home and cry did I NOOO!! I went off to the beach with my parents and pretended I was happy as larry about the whole thing…and because I did I had a really nice day. But today as I ring the specialists and surgeons for the 10th time and get “ring the other team” or an answer machine message, as I desperatly try to force them to put me on meds for my remaining colon, which is becoming more and more diseased and painful by the minute, I am feeling desperatly low and upset.
I guess I have figured out, finally, that I’m really bloody ill and a quick-fix operation is not going to cure me. I’m frightened. Frightened about what the future holds, about my health and the impact it will have on my life, about future surgery, about more time off work. The truth is that despite my happy face, quick wit and go get ’em attitude in life, underneath it all I am bloody terrified.
And you know what???? That’s ok, I’m allowed my bad days.