Being chronically ill is tough, there’s no sugar coating that fact. The pain which follows you around can wear you down and the unpredictable nature can make it hard to plan things when you don’t know how you’re going to feel one day to the next. However, my IBD, stoma and now arthritis have definitely taught me a lot of things and I often wonder who I would be without them!
I’ve learnt how to time manage
I was diagnosed with ulcerative colitis in between my two A Level years and learning how to manage my time to get all my coursework done in between hospital appointments and being ill is something I still use to this day!
I will always remember by ICT teacher (who is absolutely FAB and was my favourite teacher) being really worried and actually pulling me up on it. My monthly hospital appointments ALWAYS fell on my ICT lessons (which were all day Friday) so I was constantly missing at least half of my ICT lessons.
However, because I knew this, I learnt how to time manage really well. I asked for work ahead and on my good days I would work really hard to get as much done as possible. I took this into my degree and would always do work as soon as I got it to give myself the time to be ill and have rest days.
Side note, I actually got an A in my ICT AND I handed my work in first because I got so ahead of myself!
I’ve learnt that there’s an amazing chronic illness community
The chronic illness community, and the IBD/ostomy community, is absolutely amazing. There is so much love and support as well as practical advice and throughout being diagnosed, suffering from flares and recovering from operations they’ve been there supporting.
I’m really fortunate that I have really supportive and helpful family and friends however talking to people who actually have your illness or something similar is so eye opening and a wonderful experience!
I’ve learnt how to communicate better
I am notoriously bad at texting people and I’m not the best at talking on the phone and this is something which has not changed AT ALL.
(I am very sorry to the friends I’ve left on read/not got back to/not talked to in a while!)
However, I have become better at communicating in person, getting my point across and not taking no for an answer.
Talking to doctors is difficult, especially when it’s something new to you. I used to feel a bit intimidated and always thought the doctor knows best. I’ve come to realise that I know my body really well and I’ve learnt to communicate that to doctors. I’ve learnt to pull people up when they say something wrong or disrespectful
e.g. the time one of the IBD consultants, when asking why I’d had ostomy surgery instead of reversal, said “oh, so you’re not a bikini type of girl then”
I’ve learnt to become comfortable in my own skin
I’ve never really been someone who hasn’t been 100% themselves – I don’t do things just to fit in. However since having my surgery, I definitely think I’m more confident. You’d think having surgery which makes your body look different to others would do the opposite, and at first it did. Being involved in the community and being open about my journey have definitely helped me!
I’ve learnt to make the most of the good days
Both of my chronic illnesses are ones which flare. This means I can have a few weeks of being okay and then suddenly I’m flaring and not able to do much. A lot of the time, it can change from day to day as well.
Side note : my okay day is probably very different to a ‘normal’ good day
Because of this, I’ve really learnt how to make the most of the good days. Whether it’s cleaning everything, spending time with friends and family, going out for the day or just being able to take my time washing my hair! You definitely appreciate the days you can do things and it makes you appreciate what you’re doing as well!
Let me know in the comments something you’ve learnt from having a chronic illness and don’t forget to sign up to the new Chronically Living newsletter coming at the end of the month!