Here’s a list of things I’m sick of hearing as a person with a chronic illness — explained.
1. “Aw, well I hope you get better soon, babe.”
Yeah, soon. I smile and change the conversation to something else. Living with a chronic disease might be hard, but explaining to people that so far there is no cure and you’re not getting better can be even harder.
It’s been six years since I was diagnosed, I’m still fighting to maintain a “normal” life. If you are reading this, I will assume you know it is easier said than done. I’m far from ashamed of what I go through and have never kept it a secret in any way. I’m not necessarily offended by the people who tell me “get better soon” when I explain my situation; however, I am not a fan of the shocked and saddened looks I tend to get when I try to explain it’s probably not going to happen. Their reaction seems to imply I am not strong enough or good enough to carry on doing what I am doing.
2. “You don’t look like you’re sick, but I understand. I get colds all the time as well.”
Should I make sure I look more ill in the future? Buy a paler foundation so I fit your expectation? I am a trainee teacher who struggles to get out of bed, who has to tell her pupils she has tremors because her “kidneys don’t work” and who, a few days ago, nearly passed out in the classroom. So yes, I may not “look sick” to you, but it’s pretty hard to see an immune system that has decided to wage war on your body, or the fact that I constantly hurt because my immune system has been messed with so much. I am probably at fault for wearing makeup and washing my hair, but why should I apologize for making myself feel better by looking presentable? It’s called an invisible illness for a reason. If you had known me when I was first diagnosed, you’d probably see it differently.
3. “Working part-time must be great though.”
I’m so glad you think I had a choice. I have to admit working part-time has helped me more than I ever thought it would. Having a break in the middle and at the end of my week to recuperate is something that allows me to function the rest of the time and not fall asleep as soon as I get in from work. I didn’t make this choice for pleasure, though. I made this choice to stop myself from drowning, to stop myself from spending the whole weekend in bed just to be well enough to go back to work on Monday. It’s not everything you think it is; I am lonely a majority of the time. I spend my time alone resting up and planning lessons. I constantly wait for my boyfriend to get home, binge watch TV programs for company and talk to myself to pass the time. It’s something I need, not something I necessarily want.
4. “Why do you have scars if your kidneys don’t work?”
My scars have always been a sore issue for me, but also an issue I want to talk about since it’s one of nephrotic syndrome‘s unexpected side effects. I was 17 when I was diagnosed with this disease and honestly, for a teenage girl who is only just getting used to her body, great big stretch marks and scars did not go down well.
It’s inevitable that when you experience swelling, you will get scars and stretch marks — I just really didn’t realize how badly. I didn’t think it would be so bad that I would be stopped by horrible girls at festivals telling me how ugly or offensive my scars were, and that I shouldn’t wear shorts. They are my scars and I will let them out if I want too. I will wear a bikini by the pool and post pictures of them to raise awareness if I want to. They are the only visible aspect of my illness and actually now they are part of me.
5. “Do you really have to pee again?”
The simple answer is, yes. Yes, I have to pee. Yes, I have to look at my pee and make sure it looks normal. Yes, I have to pee in a jug and dip it and honestly, I’m not holding my pee in for anybody. It the first sign of danger for a nephrotic patient.
6. “Eternal moon child.”
I had to put this in, a good friend of mine called me this once. He meant it in the best way (as in he hoped there was a way to get me off steroids and stop being a “moon child”). Yes, for many years I’ve had that steroid “moon face.” People try to tell me that I don’t look different, but I do. I own a mirror. It has taken getting to a lower dose steroids (the lowest I’ve been on in six years) to get me looking like me again. Don’t get me wrong, I never hated my steroid face, it just didn’t look like me. She was another girl. She was cute, but she wasn’t me.
While I am always thankful for those who try to understand; sometimes people need to think before they speak.
If you live with a chronic illness, what’s one thing you wish your friends said? Share your thoughts in the comments below.