Before I start I want to say that I realize most people have good intentions and just want to help. Having said that, with all do respect please I beg you stop trying to fix our disease. It’s not helpful. If you want to be helpful just listen to us, be there for us, maybe be willing to work around our illness to spend time with us, make it okay for us to ask for help if we need it. Read up on what we are living with. Learn about it. You can’t know how much that would mean to us. Cry with us, laugh with us, walk alongside us.
Please don’t say things like:
If you ate healthy you wouldn’t have RA.
I swear if I hear that one more time I might slap someone. Healthy eating might, and I say might help with inflammation but it neither causes or cures autoimmune disease. That kind of comment actually blames us for getting these diseases. The last thing we need is guilt for being ill.
If you eat healthy you’ll be better.
No we won’t it’s a chronic progressive illness. Babies get these illnesses so it can’t be blamed on food. Period.
My father’s sister’s brother’s uncle has “lupus,ra…” and he’s doing just fine.
Who the hell cares. Don’t compare me to someone else. Everyone is affected differently. Many hide the pain, and things can change in a nano second.
You are lazy.
You’re ignorant. No we’re not. We’re sick. We have a fatigue so extreme it’s debilitating. No amount of sleep can fix it. Walk one day in our shoes and you likely wouldn’t be able to handle it. Our body is trying to kill us. That’s tiring. Not to mention the wicked side effects of most of the meds we are on.
You just need to get out more.
Don’t you think that we know that? Furthermore don’t you think that if we could, we would? Damn if only we could.
You need more exercise.
You need to shut the hell up. You cannot imagine the kind of pain we live with and many of us still do exercise. Imagine every joint in your body feeling severely sprained, never getting better and only getting worse. Add the fatigue, breathing issues, gut issues…and much more. Now you exercise. Get back to me on how that goes for you. Dr’s I’m talking to you too.
You need to lose weight it’s hard on your joints.
I thankfully haven’t had to hear this one. I’m underweight because I’m ill. Case and point right there. My joints are very painful. Weight isn’t causing it. Again, Dr’s listen up. And please Dr’s while we’re at it learn about these diseases. I had a Dr. tell me I don’t fit the box for lupus. What box?! We’re all different. Get your heads out of your text books and be willing to learn from your patients.
You don’t look sick.
What does sick look like prey tell? Someone could be dying with heart disease but you wouldn’t physically see it. Just because we don’t look sick doesn’t mean we aren’t. We become very good at hiding it, in part to avoid all these kinds of comments. This is a particularity tough one when using handicapped parking without any aids. It’s very likely it’s taken every bit of strength and energy for us to even get up and or shower in the morning. You have no idea. You won’t see that when we’re out and about. You won’t see the extreme suffering we go through when we’re at home. If we happen to get out once in a while it’s a big deal. Oh and you won’t see just how much we pay for said outing later.
You should try a homeopathic Dr. everything starts with the gut. Or try “abc” diet. It helped/cured so and so..
This one ticked me off today. Just know that when one is this sick we will likely have tried just about everything out there to get better. I did a two year candida diet. I went off all carbs, sugar, and anything you can think of that wasn’t healthy. You know where it got me? Sicker. That’s right sicker and very underweight. I did all the so called right things to no avail And if it all starts with the gut then again, why do young children get these illnesses? Again these diseases affect us all differently. Keep the “you should’s” to yourself.
If I tell you I have RA, and Lupus and you say something like, “I have a sore pinky finger.”
I understand it hurts. I’m sympathetic to you, but you will recover. Maybe if someone tells you they’re battling an illness like the above, listen show interest learn. Don’t automatically jump to telling them about your pain. It’s hard for us to talk about it, so when we do we likely trust you and want to be heard. We want you to take interest. Don’t confuse that with wanting pity or attention. It’s not what we’re after. Sometimes we just need to share our pain. They are lonely diseases.
I know there’s many more but since this is getting long I’ll stop there. Please add the things you hear that drive you bat shit crazy in the comments. Wherever there’s a chance to educate others let’s take it!
What do you hear that is upsetting? If I get a good list from you guys, I’ll post it with your permission.
Sunny days & Getting out,