Why 'everything will be okay' is not as comforting as people think

Yesterday, my confirmation letter came through for my reversal surgery. I won't hide the fact that as well as being excited for my stoma reversal, I'm also pretty nervous.

However much I want this surgery done and to be able to move on with my life, I'm apprehensive about being back in hospital for the third time, being put to sleep again, and potentially facing both short and long term complications of pouch surgery. I'm worried about being in hospital so close to Christmas. I'm worried I won't recover quickly enough over the holidays and will have to take more time out of university. I'm fully aware of the risks that come hand in hand with bowel surgery - infection, further surgery, or a poorer quality of life - and although I'm trying hard not to focus on the negatives, I don't want to pretend that these things don't exist.

In an attempt to make me feel better, a lot of people have told me that 'everything will be okay', or 'not to worry'. I understand that these people only have my best interests at heart, and they're trying to stay positive to keep my spirits up. I love and appreciate this. People who care about me only want the best for me, which is why they're putting on this brave face.

As well as reassuring me, they're trying to reassure themselves as well - they say that it'll be alright, because that's what they're hoping will be the case, and don't want to allow themselves to think otherwise. This post is NOT an ungrateful rant - and I don't want anyone to think I don't appreciate their support. But the phrase 'everything will be okay' just doesn't sit well with me, or with most people in the middle of fighting a chronic illness. Here's why.

My first surgery was an unplanned, chaotic, frightening experience. I was admitted on 16th December 2013, diagnosed with a condition I'd never heard of, and within 2 weeks I had a stoma bag (also something I'd never heard of). I had 7 blood transfusions, an open surgery, and spent time in intensive care. I faced all the psychological side of having a stoma bag and came through it. When I'd finally got home and recovered, I faced my second surgery with a sense of relief, saying to everyone around me: Well, don't worry, it'll be okay - nothing can be as bad as LAST TIME.

How I wish those words had never come out of my mouth.

For anyone who's followed me since op 2, you may remember just how badly it actually went. 7 days after surgery this June, when everything appeared to be going perfectly, I got up to the bathroom in the middle of the night feeling woozy and collapsed on the bathroom floor. My stoma bag was full of blood. Over the next 12 hours I proceeded to bleed heavily and continuously until I blacked out. The hospital called my parents immediately to my bedside and barred all other visitors. I was rushed for an emergency CT scan, and was told I may need further surgery - and that's the last thing I remember. When I woke up again, I found all the tubes that had been painstakingly removed throughout the week were back in: catheter, NG tube, rectal drain, drip, blood transfusion, oxygen mask and more.

Waking up from surgery, feeling great...

A few days later, tired but on the way to recovery

7 days post surgery, after the bleed, and back to square 1

I don't remember a thing about the next couple of days - I didn't wake up. When I finally came around, I was thoroughly shaken and thankful to be alive. It took months for me to recover fully, rather than the couple of weeks I'd expected. Despite this operation being planned, prepared for mentally and physically, it was honestly more frightening than the first.

For anyone reading this and starting to panic, please don't. I've since been told that there's a 1% chance of this sort of complication happening post pouch surgery. But I suppose that 1% has to happen to someone, and this time, it happened to me. I cannot be more grateful for the quick thinking of the surgeons and doctors that kept me safe.

But the point I'm making is this. I went into this operation feeling happy and complacent. I was convinced it would be a walk in the park. After all, operation 1 was the worst it could get, right? This time, I'd done it all before, it would be an easy ride - I'd had a stoma before, so what was new? Turns out that the second stoma actually took a lot more caring for than the first - and that was another harsh lesson I soon learned.

By telling myself blindly that it would all be okay, I didn't prepare myself for the possibility of things going wrong. I was almost too optimistic, not realistic, and didn't contemplate the fact that anything bad might happen to me. This time, it's why I really don't want people to tell me 'it'll all be okay'. The point is, at first, it might not be, at least not straight away.

Of course, eventually, months down the line, I'll be back to a normal way of life being healthy and happy, all being well. But immediately after the surgery, I might experience pain, frustration, regret, sickness - a whole number of things.

I bounced back, but not without a good fight

Being prepared for these things to happen doesn't make me negative - it makes me realistic. I'm still optimistic about the prospect of pouch surgery, or I wouldn't be going through with it. I understand that this operation is necessary if I want to experience life without a stoma bag. I also know that I've come this far, and shouldn't give up now - that's out of the question.

But rather than telling me it'll all be okay, I hope that people close to me will be able to say instead: 'Yes, things may go wrong; yes, you may have a hard time in hospital; but eventually, you will beat it and get better.' The same positive outlook, but not so immediate. Accepting both a positive future, but the possibility of issues in the present.

For anyone with a chronic condition, telling them 'it'll all be okay' isn't always helpful. Because that's the point about an illness being 'chronic' - it doesn't go away. Of course, there'll be good and bad times, but 'get well soon' here isn't really a fitting phrase. Therefore, the best way to support a friend with a chronic condition is to accept that they are ill - and to support them at their worst - but acknowledge that although some day they may feel better, right now they're really ill. To do so isn't to be unhelpful or pessimistic - it's accepting the reality of their condition and acknowledging it.