A Girl's Guide to Chronic Illness pt.1 - Grieving a life that's gone.

Writing a blog about life with chronic illness is very hard when in that moment your life comes to halt, like a lovely elderly lady named Margaret, who spotted a sparkly cat brooch in the shop window. Everyone else is busy passing by - catching the bus, going to the school, going to the "gym" - the point is everyone's life continues, whilst you're stuck behind Margaret, examining her perfectly permed hair. So you stand there for a while, bitterly watching everyone your age making the memories that they won't ever forget, whilst you are stuck on the sidewalk wishing for your chance, your chance to feel alive.

When you're diagnosed with a chronic illness you are taught to go around Margaret, you alter everything in your life, everything you know just so you can say you're existing. To live with a chronic illness however, that's the "fun" part. There are days in our life that completely revolve around the illness, making such a fuss of it like it's, its birthday. We take it out to special appointments on a budget throne ( a wheelchair) with pretentious consultants, we give it sterile presents of tablets and needles, and instead of bows and ribbons we give it tubes and lines. These are the days where our illness is the most important things going on in our lives, but other days, we have to also try and go about our day doing the normal things we would be doing if our body didn't suck. Wake up, press the snooze button, realise I forgot to do homework for that really scary teacher with a monobrow, put my milk feed on with the world's most annoying pump that doesn't stop beeping, attempt to do the homework whilst in the car with half of my hair unbrushed, bleep, sit through many dull lessons, bleep bleep, take those really weird shaped pills, bleep bleep bleep,miss my bus, bleep bleep bleep bleep, procrastinate doing homework by watching way too much Grey's anatomy, bleep bleep bleep bleep bleep, attempt to throw the feeding pump out of the window.* Our illness and our life blends into a somewhat normality, that is, until you realise most teenagers don't have to pop 20 prescription meds a day.

For those of you wondering what chronic illness is, it's " is a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time" (thanks Wikipedia). Yes that's right, not only does it make our life hard it steals our time where we feel okay. Chronic illness sucks, it sucks so so so bad, and I don't want to sugarcoat it. I could write loads of posts filled with pretentious diets claiming to cure all, and soul sucking mind over matter crap, but what good is that going to do? On a daily basis we deal with shed loads of pain, many "you don't look sick"s, poop, weird medical devices, "just breathe through it"s, leaking body fluids we didn't know we had and longgg waiting times for the pharmacy. Chronic illness changes everything you once knew and shakes your world into something you don't recognise anymore, it's like a broken washing machine, but not as nice smelling. You grieve a life that wasn't so difficult, where it wasn't so much effort to get out of bed.

This post I guess portrays my current bitterness towards my illness - I suppose I feel like it's this big bad wolf stopping me from getting my happy ending. I'm grieving. I'm grieving an old life once lost. The one where I could experience all the shenanigans teenagers go through, the one where I would have stories to tell my grand kids, the one where I could eat, the one where I didn't know what pain was.

They say there are 5 stages of grief: denial, anger, bargaining, depression and acceptance.

Stage 1 - Denial: When I was first ill, I never digested*** the idea that this illness wasn't going away, I didn't understand or accept that my life was going to be different. I instead tried to just refuse it, turn it away from being part of my life. Turns out the return policy for chronic illness is atrocious, they don't come with receipts or a 28 day guarantee.There were days many of them, where I would fall into habit and tell the world I was fine, tell myself that I was fine, in hopes I said it enough the illness would disappear. There was this underlying fear that the minute I said I wasn't fine, I would break and never be fine again. The root of the denial was this unbearable shame. I was ashamed to be anything less than perfect, to be anything less that everyone else. I felt brandished. I felt alienated. I based so much of my self worth on my illness, that not only was I afraid of others not wanting me, I didn't want me. I was scared I would lose the person behind the pain. I am, perhaps, sometimes still in denial.

If there is anything I have learnt from denial is that you aren't your disease, there is still a person behind all the tubes and medication, yes, our diseases take up so much of our life, but it only makes up a small part of who we are. There is nothing to be ashamed of, if you have an illness, it makes you special - you fight a battle everyday of your life that most people would give up on at the first hurdle.

Stage 2 - Anger: The anger in this stage often feels endless as it stretches to everything: myself, my family, my doctors, to bag that breaks and spills its entire contents on the floor. I was angry, I was angry that I existed. I was angry that every waking moment I was in pain. I was angry there was no magic pill to make me better. I was angry that my body failed at doing basic human functions. I was angry my body failed at working properly, the one thing it has to do. I felt so angry at everyone else who had a body that didn't suck. I would just sit there with tears filled with anger, and ask myself what did I do to deserve this. The truth? No one did. I just wanted to be angry. I just wanted to blame something, even though there wasn't anything to blame. So I blamed myself, and hated everything that I was. Everything I couldn't do seemed like a failure, when I was taking medication I thought of myself weak and every time I couldn't eat food I was a disappointment.

Stage 3 - Bargaining: I thought I could become this Del boy from Only Fools and Horses, and start negotiating my illness to some high power. I started of with a simple "please", which soon led to me begging. I was desperate. I was desperate for my old life back. I was desperate for the pain to end. I was willing to do anything. A lot of self blame came with this stage, a lot of those "what-ifs". What if I was a better person, would I be sick? I'm the type of person that believes everything happens for a reason, but during the bargaining stage I couldn't see what that reason was.

Stage 4 - Depression: This was the moment where I realised nothing was going to take this illness away, and that realisation was the most loneliest and scariest thought, knowing I wasn't going to be the same, knowing I wasn't going to be better. I suppose because I hadn't "beaten" my chronic illness I felt like I failed myself and failed everyone else around me. Days became monotonous, and the reason to live was escaping my fingertips. I was tired, tired of living a life that I didn't want to live. There were days, some dark days, where I felt hopeless and I didn't want to be alive anymore. I just didn't want to be in pain anymore. I didn't want to live in my body anymore.

Stage 5 - Acceptance: I'm not sure if I'm here or I'm telling myself that I'm at this stage but either way I'm not at stage 1 or 4 either. Things don't change quickly or even change at all, but a bad day or many bad days doesn't have to mean a bad life. There's this quote that I've lived by "Everything will be okay in the end, and if it's not okay it's not the end." Things might not be okay now, and they might not be in 10 years time, but your happily ever after will come. So whilst I don't know if I will ever fully accept my illness, I've learnt to believe in happily ever afters, illness or no illness.

*Just to clarify, there is no such thing as too much Grey's anatomy and no feeding pumps were harmed...

** When our Chronic illness suddenly has tantrums and worsens our symptoms and then it will eventually subside to our daily symptoms. Flare ups can last for a few hours to up to months. I know, how kind of it.

*** I'm laughing at my accidental pun. One of my illnesses involves my gut its terrible job at digestion. So turns out I couldn't digest truths or food.