3 ms·
I guess I can provide an unusual perspective. I've lived with a chronic kidney illness since I was 14. Thankfully my illness does not manifest outwards and I am
by syncbehind 6y ago
I guess I can provide an unusual perspective. I've lived with a chronic kidney illness since I was 14. Thankfully my illness does not manifest outwards and I am able to hide symptoms quite well. Even when my kidneys failed, I was able to schedule my life around my dialysis appointments.
One of the biggest things that I notice shift as I grow older is that I no longer package my illness and my life separately. I think there's a tendency to treat chronic illnesses as acute and only focus on them when severe symptoms arise. As others have mentioned, that almost always leads to burnout. I regularly packaged my illness when I was in undergrad (worked full-time, went to school full-time, and then spent the remaining hours either sleeping or on dialysis); do not do this.
I don't think you can really completely remove the stress but eventually it stops becoming the highlight. It's almost like tinnitus, it's there all the time but there are large swathes of times when you successfully ignore it.
Your world gets a bit smaller. You just don't have the mental energy/ability to engage the same number of people/events. My social life definitely shrunk when I was on dialysis. It opened a bit more once I got a transplant, but not terribly. You still have a lot of concerns because after transplant, you're immunocompromised for the life of the kidney. Going to events becomes very stressful because of the risk to your health (Covid is a nightmare).
At the end of the day, you have to REALLY pick what you do with your time. It's like you're a cellphone with a broken battery that only charges up to 30%; you can still do all the things you used to, you just run out of juice a lot quicker.
- hpagey 6y agoCan I contact you ? If so how?
- syncbehind 6y agoSure, I'm @ayushpokh on twitter and IG.