What People With Chronic Illness Want Others to Know

Just about everyone who has a chronic illness fights not just their illness, but the preconceptions and judgments of their friends, family and even complete strangers. Stories like this happen way too often.

I asked people on my Facebook page, in the Spoonie Mommas group and the Sunshine and Spoons group what they wish people knew about their chronic illnesses. The answers were pretty eye-opening.

If you love someone with a chronic illness of any kind, read this. For them. You’ll come away with a greater understanding of what they are going through every day.

 

For me personally, I wish people knew I feel like I have the flu just about every day. Imagine that… waking up in the morning aching intensely all over, so exhausted that you can barely put one foot in front of the other and it gets worse throughout the day. Now imagine waking up like that every single day and knowing it will never get better.

I also wish people knew that while yes, I’ve had Ehlers-Danlos syndrome my whole life, it has gotten worse, especially in the last few years. I’m not just faking it and I’m not trying to get attention. I did not get worse because I got diagnosed, I got diagnosed because I was getting worse.

Here’s what everyone else had to say when I asked them what they wished others knew about their chronic illnesses…

“It sucks big time.” – Caroline P.

“Fatigue is different than tired. My aches and pains aren’t like the normal aging ones you say you have too. I won’t ever ‘get better.’” – Meagan P.

“I have other things to talk about! Everyone’s first questions when we have a chat is on my hip and progress. I do appreciate the care and concern, but at some point it becomes part of just how I do and doesn’t need to be a major topic of every conversation.” – Jen DeFrates from Heaven Not Harvard

“It’s not a joke and it is not pretend.  It is painful, and I am not trying to get attention! I would not wish this on anyone.” – JulieAnn S.

“It’s like fighting a losing battle somedays! And if I’m having a flare-up (as I am now and have been for at least the last two months), they don’t want to hear about it and want me to act as if I’m fine. It’s so frustrating!” – Tricia M.

“It changes everything.” – Darci Lopez from Life Unplanned

“Stop saying, ‘I hope you feel better.’ I never will be free of this. I would prefer you ask if today is a bearable day or a tough day because it shows a sense of understanding.” – Ashley B.

“There are days that hurt so badly you can’t think and days where the pain is barely noticeable. On those days where the pain is barely noticeable, I get to do more, but usually pay for it the next couple days or even so much as a full week later.” – Carrie E.

“Just because I’m not actively complaining about feeling terrible or being in pain doesn’t mean I feel good. I just don’t want to constantly whine and complain or talk about it with people who don’t really care. In fact, I’m probably not going to mention how I feel unless you genuinely ask.” – Tiffany L.

“I never know how I’m going to feel from one moment to the next, and it will always be this way for me…for the rest of my life.” – Chrissy N.

“The amount of and severity of pain I fight through to do everyday stuff. Despite me looking normal (ha, or a hot mess), I still fight a hidden battle of pain. But I do it with a smile and joy, because this girl wins every day. Sometimes, I feel like a straight-up warrior after I successfully complete a day.” – Karise D.

“That it’s genetic. I didn’t just ‘come down’ with it out of nowhere and trying probiotics or whatever else they are selling isn’t going to miraculously cure me of it. I am who I am. If you don’t like my genes, then stay out of them. Pushing your ‘cure all’ on people with genetic conditions isn’t going to help us.” – Keri C.

“I’m not faking, over-exaggerating or complaining too much. And if there was a magical cure, I would’ve found it by now.” – Vee H.

“I’m not exaggerating when I say I live with pain every day. Just because you can’t see my disability doesn’t mean it’s not real. Please don’t look down on me or judge me until you’ve walked in my shoes.” – Christine F.

“It is real, and the pain is awful. If there was a cure, I would certainly seek it. I deal with pain daily and every second of the day or night. I try to smile and enjoy a good laugh, but on a daily basis that is not reachable. I stay home a lot because I do not want to be around people that think this is not real.” – Susan L.

“The fracture of relationships and how difficult it is for kids especially who are isolated from their illness. As the rest of the world moves forward, they are left behind. For parents, the constant canceling and bargaining that goes on on a daily basis between illness and life.” – Kathy T.

“How desperately heartbreaking it is to realize your old life is over and you must come to terms with a new you.” – Sally C.

“It’s hard enough for me to deal with the pain and side effects on a daily basis without working to try and convince or console everyone around me. I would rather just be prayed for and accepted for who I am than either be pitied or judged.” – Meg S.

“Just because they see me having a good day, that doesn’t mean I’m ‘getting better,’ and I’m not sad about my illnesses and really don’t need pity. It’s a normal part of my life and is really difficult sometimes, but acknowledging and accepting my disability doesn’t mean I’ve given up on living a full and happy life. – Melanie M.

“I’m not going to get better. Please stop telling me I will if I want to.” – Sara G.

“It is invalidating to compare everyday aches and pains to the severity of the pain one feels when their joints slip out of place or muscles or connective tissues spontaneously rip. And even though we are often still walking around, that doesn’t mean we’re OK. Often it means we are drugged beyond reason, likely taped or braced together and extremely good at managing pain because we don’t want to miss life by staying in bed every time we are in agony.” – Dotty Q.

“They have no idea how much I hide my pain. I don’t talk about my pain because I don’t want to sound like I’m complaining. I keep so much to myself and it’s lonely being me and having no one to talk to. How I quietly cry from the pain. But on the outside, I look fine.” – Dreena M.

“I want people to know I am not going to ‘get better.’” – Ginny W.

If you have a chronic illness, what would you add to this?  If you don’t, did you learn anything about having one?

This post was originally published on Sunshine and Spoons.

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Thinkstock photo via sapfirr.