I don’t want people to feel sorry for me, or look down on me and say, “Oh, you poor thing,” and “You’re in a lot of pain,” and “How do you deal with it?” I don’t want to feel sorry like a pity party from friends and family. So I just go on about my day happily, putting on a happy face for them, I guess. Like a mask, but I’m hurting inside. I’m constantly in pain, but I forged through it and I tried to make the best of every day, and every minute that I don’t have pain, or issues and stuff.

Well, mostly, I guess it’s irritating if someone says, “Oh, I have arthritis too,” because they generally mean osteoarthritis and it’s, not that it’s not painful. I have that as well, but it’s different. Or when someone will recommend essential oil or, “Oh, you should take turmeric,” or one of these things that I have actually tried and have had zero results with. So those things kind of make me cringe when they want to give advice or, “Oh, I understand, my knee hurts too,” or something like that. That’s mostly it.

The one thing that I hate with all my being is when people tell me that I’m too young to be sick, which is ridiculous because even babies get cancer. I hate that. Sometimes people mean well when they say that, but it just makes me feel like crap. I didn’t choose to be sick; I just got sick. The other things that I hate is when people say, “Oh, if you just relax, everything will be okay.” I freaking meditate every day, and that doesn’t take the illness away. The other thing is when people compare their colds and their headaches with what I go through every day. I wish people would just listen, and if they don’t understand, I don’t mind the questions. I would rather have people asking me questions about my illness than just giving unsolicited advice, especially when they don’t know anything about my condition. And so, I just wish people would educate themselves more.

The words that they say to me and the ones that make me cringe are, “You don’t look sick.” And I really want to say to them, “Well, you don’t look stupid.” It’s just, if they can’t see a physical illness, they just don’t get that your whole body is on fire and you are in pain.

I wish people wouldn’t say, “Oh, it’s just arthritis, I have it too.” But there’s a difference between osteoarthritis and rheumatoid arthritis. I also wish people wouldn’t say I’m too young to have this condition because that’s not true. I wish people would understand that this is not an easy condition to live with.

Oh, I always hate, “Oh, it’s all in your head,” or, “I get that too. Everyone gets that. I feel the same way.”

One of the biggest things that people say are, “Oh my goodness, you’re too young to be experiencing this much pain from arthritis.” They don’t seem to realize that this isn’t just osteoarthritis. This is rheumatoid. And this is an autoimmune disorder and that it’s not just pain that affects my joints. It is also short-term memory loss. It is fatigue. There’s just a lot of things that go with it that people just don’t understand. They just assume that it’s just a little pain here and there and that is so incorrect.

Biggest, biggest, biggest thing is that they say that, “Oh well, I have arthritis too.” They don’t understand that RA is different, that it’s an autoimmune disease, and not just arthritis. And they don’t understand that I can’t just pop a couple of Tylenol Arthritis every day and I’m going to feel better. So that’s the biggest frustration, is people just don’t understand.

I think for me, I hate when people say, “But you’re too young to have arthritis.” Obviously there are many people younger than me, like little kids that have juvenile arthritis, and things like that. When people are like, “Oh, you’re too young, you can’t have it,” or “It can’t be that bad,” I hate that because it’s like, well, I clearly have it. I’m getting treatment for it. I don’t like that. Then I think sometimes, because I don’t look sick, people will forget that sometimes doing something mundane as like showering is a lot of effort for me. That could tire me out. Or like I’m on heavy drugs, so I can’t go out drinking with them because I need to tone it back because of the drugs I’m on and how they interact with my body. I think I am very fatigued a lot of the time. It takes me a lot just to get up and go to work and do that. I think sometimes people just say like, “Oh, you don’t look sick,” or they’re like, “It’s not that bad.” I’m like, “You don’t know what it’s like to have every day.” I think that misconception that just because I don’t look sick, I’m fine. Then the last one would be that people just assume it’s like a dull pain, when some days it is just a dull pain, but other days it’s debilitating. I’ve had it where I’ve had trouble getting out of bed. When people just assume it’s like something very much minor and they’re like, “Oh, it’ll be fine. Just take some Advil.” I’m like, “No, that’s not what it’s about. It’s actually more than that.” Those are probably my biggest frustrations when people comment on it. Or when people try to give unneeded advice. Like, “Oh, you should change your diet. You should do this and that.” It’s like, I’ve done the research. I know about my condition. I know what I need to do. I don’t need unwanted advice about it.

I mean, that’s a tough one. Being an adult now, I don’t encounter so much stigma with having RA as I did when I was a kid going through middle school and high school with RA, being in a wheelchair, having to use a walker, having to take the elevator instead of the stairs and have people staring at me to say, “Oh, well, you don’t need that. You can’t really be disabled. There’s no way that you actually have this. Oh, only old people get this.” Those are things that made me uncomfortable then. And I mean, they still do make me uncomfortable now, having experienced that when I was younger. Now as I’m an adult, I have a thicker skin and I know a lot of it comes from a place that people just don’t know. They don’t understand the implications of it. For me now, I know it’s just something that my body decided, “Oh hey, this is another challenge for you and you can overcome it.” And a lot of times, people don’t understand but that gives me a chance to become an educator, to become someone fighting for understanding for this because it affects a lot of people. Additionally, being adult, I don’t really tell a lot of people unless they’re close to me. People at work, et cetera, et cetera, I don’t tell them first off “Oh, Hey, I have these health conditions,” because I don’t want that to impact how they see me, how they think about me. I don’t want them to think that I’m less than I am because I have health conditions, which is a kind of awful thing to think or say, but I know the reality of it now. I encountered a lot of challenges when I was younger with it, going through school with it, and I don’t want to deal with that again.

The one thing that bothers me the most is, “Well, you don’t look sick,” when I have to use my handicap placard because there are certain days that my legs and my joints in my knees hurt so bad that I can’t walk very far and I have to park in a handicapped spot. So I get out and I don’t look sick as they call it or disabled as they call it. It’s very upsetting when some… I had an incident a woman at Walmart said, “Why are you taking that spot up and using somebody else’s handicap placard? Because you’re not disabled, you don’t look disabled.” I said, “Lady, you don’t know what I go through and how I hurt.” A lot of things you can’t see. Just because you can’t see somebody’s pains and issues and sickness doesn’t mean it doesn’t exist.” And I wish more people would be a little more understanding when you say, “Well, I’m just not able to do that because today is a bad day.” “Well, you should be able just to scratch it and get glad. You should be able to go ahead and do it. You’re just lazy. You’re too fat.” And that bothers me a lot.

Definitely the one big thing that bothers me is when people say “arthritis” and compare it to the type of arthritis that maybe your grandparents have or your parents, because it’s so much more than just arthritis. And it’s everywhere, not just an arthritic knee. My whole body is arthritic, and it’s not the same arthritis that an older person gets.

“Oh, you look fine. There’s nothing wrong with you.” That would probably be the number one thing that I hear from several of my friends. “Oh, you’ll be fine. You can do it.” They just don’t get it.

Well, my disease largely is an invisible disease. I’m being ate up from the inside out. So for the most part, people cannot see that. So, the absolute worst that I hear that causes me to cringe and causes me pain is when someone with good intentions walks up and say, “You look great,” and I could just be dying inside and putting up a front that it’s a bad day, but I hate every time I hear that, and I don’t want to have outside or visible indicators. I just wish people would forget that totally.

I would say the biggest thing that happens is people don’t understand that you are not going to be… that your disease is invisible. I look just fine. I look like I’m healthy, but I’m not. So, it’s upsetting when people go, “Well, you look good.” That bothers me. And the other thing is, is when you tell someone that you’re fatigued from a disease like rheumatoid arthritis, they’re like, “Well, I get tired, too.” And I’m always thinking, “Yes, but this is not just being tired. This is being almost like somebody just zapped every ounce of energy that you ever have, all the way down to your bones.”

I wish they wouldn’t say, “But you’re so young.” I wish they would understand that it’s not just arthritis, and that it’s fatigue and brain fog and just… Yeah. Like, “well, why don’t you”…And also all the unhelpful suggestions of things I have already tried or things that I’m unable to, because my rheumatologist is very, very, very conservative with medication and medication changes, just…Thanks, I got it.