What People Don't Know: 7 Misconceptions About Arthritis and Invisible Disabilities

Welcome back to Musings of an Arthritic Artist! 

It's July, which means it is Juvenile Arthritis Awareness Month! Therefore I am going to be talking about the myths surrounding arthritis and invisible disabilities. 

These are based on my own experiences and stories I've read on the internet. Arthritis myths are going to come first, followed immediately by invisible disability myths.

I'm just going to cut straight to the chase. Let's get into the misconceptions!

King, Alexandria. Musings of an Arthritic Artist. 2021.

Misconception #1

Arthritis is just for old people

It is estimated that around 300,000 children in the United States are affected by Juvenile Arthritis. While it's the most common autoimmune disease in children it's still rare. It's estimated that about 1 in 1,000 children is diagnosed with JIA. I have talked about this in two other posts. My introductory post (linked here: What No One Tells You About Arthitis: Introducing Me (opens in new window)) and my post from last week (linked here: Everything You Need to Know About Juvenile Arthritis: A Beginner's Guide (opens in new window)).

This is something that people will commonly say, both in-person and online. There's this misconception that the only people who have arthritis are old people, when in all actuality most people who have arthritis are actually under 65 years old. Not to mention that the type of arthritis we're talking about is different. While there are subtypes, there are technically only two types of arthritis types I need to mention. 

One is the autoimmune disease type of arthritis in which the body sometimes attacks healthy cells and tissue if a flare is set off (rheumatoid arthritis, juvenile arthritis, etc.), and the second type of arthritis is linked to wear and tear of joints and cartilage (osteoarthritis). 

In both types, the joints are connected, but they are distinctly different. One can attack healthy cells and tissue, while the other isn't an autoimmune disease and is caused predominantly by being overweight (due to knee strain), being middle-aged, or being part of the elderly community.

This is where a lot of the confusion lies. Elderly individuals do commonly have arthritis, but it's usually a different type and they don't make up the larger arthritis population. Anyone can get arthritis. My body proved that. Thousands of other childrens' bodies prove that.

No autoimmune disease that I'm aware of only affects one age group or gender. There are some conditions that are gender exclusive (Turner Syndrome only affects girls for instance), but autoimmune diseases don't. While some groups may be affected more (females are more likely to have an autoimmune disease than men), both groups are still affected, even if the numbers are imbalanced. 

Age is also not a marker of healthy or unhealthy. While young people tend to be healthier, there are a lot who have medical conditions. I'm just going to list a few examples of conditions that children can have. 

Type-1 diabetes (not to be confused with type-2 diabetes), juvenile arthritis, childhood cancer (the most common being leukemia), asthma, muscular dystrophy, epilepsy, among many others. Children can even get depression, anxiety, and panic disorders. 

Misconception #2

You can't be disabled because you can walk!

Would you tell a person with depression that they can't be happy because they're depressed (if so, you shouldn't)? Would you tell a person with a mental disability that they can't be disabled because they aren't in a psychiatric hospital (I hope not, seeing as this is a really rude statement to make)? 

If the answer is no, then why is it okay to tell a person with an invisible disability that they can't be disabled because they aren't a wheelchair user or don't have a mobility aid? 

Plenty of people with invisible disabilities walk without any mobility aids. It doesn't change that they are disabled under law. I can walk, and I look normal, but there was a time where my legs couldn't walk very far or for very long, to the point where my parents and sister would take turns carrying me. 

When I was a child, I was offered a wheelchair, but I refused it, not wanting people to stare at me in public (I hate being the center of attention, as I've mentioned numerous times). 

This is the only situation I have experienced in passing. One was out of town, while the other was in my home town. I'm not going to give the stories here. I have a post planned for the end of the month that will talk about these stories in more detail.

I can walk, but I have handicapped plates that were registered under my name about a decade ago. The plates on my family's vehicle belong to me, even if I'm not the one driving. As long as I'm a passenger in that vehicle, the plates can legally be used in a handicapped parking spot. Those plates were given to me by the government, who affirmed that because of my medical history and state of my condition, I was physically disabled under law. 

To say that only people who use wheelchairs are disabled is ignorant discrimination against disabled people who have an invisible disability, and is the definition of ignorant ableism. It's a harmful stereotype that can lead to invisibly disabled people being harassed and accused of "stealing a spot for a person with a disability" by everyday passersby when they do something as simple as go shopping or check into a hotel. It can make someone feel as if they're not disabled enough to be accepted as disabled by society. It can make them feel like an impostor. 

It's rude to go up to someone who has handicapped plates and tell them they can't park there. I'm sure that there are some people who would use them illegally to get the "benefits of being disabled," but most people are just trying to go shopping or to an event, and just because they don't have a wheelchair, one can't (or shouldn't) assume they aren't disabled. 

There are people out there who fake disabilities for benefits, money, and even pity, but they aren't the norm, and you can't tell when a disabled person is faking, especially if you've never met them or known about their condition. 

Just because someone in a wheelchair stands at some point, it doesn't mean they aren't disabled (there are ambulatory wheelchair users, who have to use a wheelchair some of the time and can walk some of the time). 

To be honest, if I had gotten a wheelchair as a child, I'd most likely consider myself an ambulatory wheelchair user. It wouldn't mean I'm not disabled. I'm still disabled, even if I can walk. My level of disability just changes. My body has physical limitations and can't do certain things. 

As a child, my knees and ankles would swell up so bad for at least month to where I wouldn't be able to walk or move around much, but after six months, I could walk normally as if nothing ever happened. Being able to walk does not exclude you from disability, even if it's physical.

Misconception #3

Your pain can't be that bad. You're just faking.

Why would I fake being in pain? For pity I do not wish to have?

It isn't fake when a person with a mental illness is fighting a battle with their own mind, just as much as it isn't fake when my own body is attacking itself. Why would I fake being in pain instead of just saying I want to have a lazy day where I do nothing? 

To the people who say this: I wish you could live one day in my body when I'm in the middle of a flare, because then maybe you'd change the perception you have. The pain we (people with autoimmune disease) feel is different than the pain a standard, healthy person feels. There are times where our bodies feel as if we're literally being lit on fire, burned to the stake, or touched with a hot poker. 

There are times where we can't sleep because that burning is so intense. If you felt as if you were burning, you'd be in pain as well. Sometimes it feels as if one joint is constantly being burned, while other times the burning is sudden and sharp, but fades, then comes back. 

Pain tolerance exists. Some people feel pain more strongly than others. Some are affected worse than others. I can guarantee that most people don't like being in pain, so why would they fake it? Most people want to live life without any pain, physical or emotional. Most people don't like feeling pain, so why they would be faking I don't have an answer for that. 

As someone who feels burning pain occasionally (more often right now because I'm already in the middle of a flare), it isn't fun, and I hate experiencing it, so to tell someone with an autoimmune disease or invisible disability this is rude and it diminishes and minimizes the pain they feel. 

Misconception #4

You don't look ill

First of all, thank you for telling me I look fine. I work hard to look as if my body isn't burning inside. But on a serious note, what does ill look like on an autoimmune disease scale? This is another reason I don't identify myself as having an illness, especially if I talk to another person. 

For one, I'll be told this, and for another, I'm most likely going to get asked the question, "Are you contagious?" since illness is a synonym of disease, which is a synonym of virus, so I just avoid using "ill" to refer to myself. I also just don't like the way the word sounds. 

I'm not "ill." I have a condition that affects me physically, which sometimes disables and debilitates me if certain triggers and inputs are introduced. That's it. My immune system is hyperactive and can occasionally be annoying.

Misconception #5

Your pain isn't real--it's all in your head

I wish it was all in my head. At least then I could wish the pain away and it would actually leave instead of staying and refusing to let me sleep. This is what people with chronic illnesses describe as "painsomnia," and it is very much real. I have experienced it myself many times. 

This has the same effect as the one about someone faking the pain they feel. Most people develop autoimmune diseases when they're older. However, in my case, this is my response to this statement: "You're right. It's all in my mind, never mind that I was diagnosed with what I have as a literal infant at nine months old, but I digress."

Considering babies don't even completely know what pain is (all they know is that their body doesn't feel good, which leads to loud crying; they don't know what the word is for what they're experiencing because they don't even know what words [by the definition] are), It's not in my head. There have been many times where I've wished for the pain to go away. 

Spoiler alert, it doesn't work because the pain is real and incessant, and occasionally doesn't want me to sleep. My pain is not psychosomatic. It's real, and just because you can't see it, doesn't mean it's all in my head. 

Misconception #6

You're just seeking attention

For what? Pity? Why would I seek attention for medical purposes? Who does that?

I hate being the center of attention, so why would I be seeking it? The last thing I want is to be seen as "other" or "abnormal." I don't mind being seen as different, because everyone is different in some way, but I'm not going to seek attention for this. Because of how ridiculous I find this statement, I'm not going to spend many more words discussing it. 

Misconception #7

You don't need it

This meaning that I don't need the disability "benefits" I get because of a few reasons. This was actually a misconception added to this list by my sister. I knew that I wanted to have 7 misconceptions (because July is the 7th month), but I could only think and find the first 6 on the internet. 

Then I asked my sister--who is an outsider looking in--what an outsider might assume about arthritis or invisible disabilities. This is one of the ones she mentioned that I hadn't already included on this list. 

I've never seen anyone mention this, nor have I ever had this said to me, but if it was, I'd be annoyed. I know my limitations. I know what I can and can't do. I know what my body can and can't handle, and I'm not going to let someone else dictate my limits or my necessities. 

Do I always need my plates? No. There are days where I could walk an amusement park and not have any issues, but sometimes I do need to use them. Sometimes, my knees hurt and I don't want to walk too far to go into a store. This is an ignorant comment to say, especially if the person you are telling this to is a stranger.

That's it for this post! I hope you enjoyed it! 

Until next time,

Lexi K🖌