Stop telling people with chronic illnesses to be positive (please xx)

I’ve just left a holiday early because I’ve been coughing heavy blobs of blood and have opted to pull out / cancel two other holidays and numerous other days out because I am so unbelievably stressed about: 1) it becoming severe episodes of blood and 2) not being able to get to the hospital. I’m very upset and angry right now so this is going to be an ugly, disjointed, and perhaps slightly cringey without any real conclusion rant but I've just got to get it onto paper and share just how awful chronic illness can be, or any illness or injury for that matter.

I was (metaphorically) flying before the port surgeries, since starting Kaftrio I had worked so bloody hard to get to the level of health I was at. Two and a half years I kept myself well and healthy to really take advantage of this new lease of life. I deserved it after so many years of poor lung function, frequent hospital admissions, IVs, orals, nebs and inhalers. And now, I feel like I'm back to square one. Now, my lungs are so tired. In the space of 10 days, the surgeries took what I had and squandered two and a half years of progress. Unless you've been in a position where your health has been stolen from you, you will never be able to comprehend how it feels to lose, without a doubt, the dearest thing you’ll ever have. Your freedom, your independence, your hope. You haven't got anything if you haven't got your health.

I put so much effort into my health, I reduced my drinking significantly when I left uni, my adherence to my medications is just shy of 100%, every single day, I'm taking 30 tablets a day, three inhalers a day, four nebulisers. I do my very best to stay active, admittedly I don't gym, but I walk a lot, get on my bike frequently in the summer, yoga every week. I've never lit a cigarette (I've held one... it's a metaphor) and I've never vaped (I'll happily throw one across a pub garden though) because you know l've got a brain?? I can’t help but feel I’ve been cheated out of my health despite doing everything right and it’s breaking me from the inside out.

People keep telling me to "stay positive" and I appreciate that it comes from the most heartfelt, compassionate place but I wish there was someone to tell me this instead but nobody ever has so I'm going to be the one to say it… you are allowed to break. You do not have to listen to someone who’s never known anything but good health try to tell you to “be positive”, smile politely and thank them for their support because they really do have the best intentions but you cannot convince someone of something that they haven’t had first-hand experience of.

When life pummels you over and over again, and you've absolutely reached the end of your tether, you do not need to stay strong the whole time. You are allowed to be angry, seething even. I don't think people realise how much strength it takes to always look on the bright side all the time when you've been battered. It's difficult to continue to believe that there's a rainbow after every storm when life hasn't been that way for you. Life is unfair, it's brutal, when you think it's done punishing you, it rears its head again.

So yes, lie down for a bit, give in to the anger, go completely insane in your despair, let yourself feel the pain, take it as far as you need, do what you have to do BUT (I'm going to sound like such a hypocrite when I say this after spewing all this doomsday stuff), but you must come back at some point, you’ve got to get back up and keep fighting as Rocky Balboa so wisely put…

The world ain’t all sunshine and rainbows. It is a very mean and nasty place, and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t how hard you hit; it’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That’s how winning is done.

At this point, I think I'm just trying to convince myself of all this but if you find yourself resonating with what I'm saying then I'm pleased I could get through to someone other than myself.