Things Chronically Ill People Want You To Know

Hi friends, this blog post is dedicated to a list of things that chronically ill people want you to know. Being chronically ill sucks, so when we get support from loved ones around us, we really appreciate it.

Make sure you also check out my IG for more chronic illness type posts @asheycakes.

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Things Chronically Ill People Want You To Know

• When someone tells us we don’t look sick/are looking good, it doesn’t help us. It makes us feel worse because we think we’re not going to be believed.

• Being tired isn't the same as chronic fatigue. I'd love to wake up super refreshed at 6 AM and ready to seize the day like I used to be able to. I remember being so excited for uni that I would wake up at 5 AM, get the bus, and watch the sunrise on my journey. Now, just driving can be a chore.

• Cancelling plans last minute isn't personal, and we feel super guilty for doing so. We really want to come.

• Advice can be exhausting and overwhelming, especially when we already have a big healthcare team of lots of doctors and specialists. Things like "have you tried losing weight?" "have you tried yoga?" "have you tried keto?" etc etc.

• Good days and bad days happen. Good days don't mean we're cured. Healing isn't linear.

• We often grieve our old life. Even when we accept that we're sick, the loss still shows up. I am struggling with this right now. I miss when I could do a workout at the gym and not feel like I've come down with the flu the next day (without actually having the flu).

• Our limits are real. Pushing past them is non-negotiable. It often makes us feel worse.

• Comparing us to people who have it worse sucks. We know we could be way worse off.

• Support doesn't mean "fixing us". We just like to know you're there.

• Consistency from loved ones matters.

• Being chronically ill can be embarrassing. I'm embarrassed to use my sunflower lanyard because I don't look disabled, even though I can use it for anything from anxiety to my slipped disc to my suspected POTS (all hidden disabilities).

• Offering to come to a task is very helpful, even if we say no.

• We worry about being a burden to others. We worry about disappointing our loved ones. We worry about not being good enough.

• Accessibility benefits everyone.

• We're constantly making calculations of our energy limits (check out spoon theory).

• We move at different paces, and that's okay.

• We still want to do the same stuff with you that we used to. Sometimes it's just harder, and we might need to cut the day short, and obviously, we always want to be invited.

• Low-energy activities are great.

• We don't want to be socially isolated, even on days when it's hard to leave the house.

• I want to be a good friend, even if it comes across as me being selfish.

• We aren't faking it. If it were all in our heads, we'd be cured.

• We don't choose this life.

• Often, we will act like we are well just to please the people around us.

• We'd love it if you visited us - just let us know you're coming!

• I'm not lazy.

• I'm still me.

What's something you want someone to know if you're chronically ill? Let me know in the comments below.

Ash x