What Is It Like Living With Juvenile Arthritis?

Welcome back to Musings of an Arthritic Artist! Last week, I posted a guest post where my sister talked about what it's like having a sibling with juvenile arthritis. 

If you didn't read that post, here's the link: Guest Post: What Is It Like Having a Sibling With Juvenile Arthritis (opens in new window) This week, I'll be explaining what it's like living with juvenile arthritis. 

Obviously, I'm only speaking for myself. Most juvenile arthritis symptoms (stiffness, swelling, joint pain) are universal, but kids are impacted differently depending on what arthritis type they have and how badly they have it. 

For this post, I will be going a bit more in-depth on my life's story as far as my arthritis goes, so put on your seatbelts because this is going to be a crazy (and long) ride. 

With that being said, let's get into the post!

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

I've had a pretty crazy life. I'm eighteen, and I've been on chemotherapy, dealt with dozens of needles, been in a lot of pain, been unable to walk, been unable to draw, been underweight, nearly gone colorblind (that's a story for another time), had MRIs, X-Rays, and CT Scans (commonly called Cat Scans), been hospitalized (once; I don't remember the experience), and I've been to at least fifty appointments (dentist, optometrist, pediatrician, and pediatric rheumatologists). Those things can all be checked off the bucket list I don't have.

I'm not writing this post for pity. That's the last thing I want. It may seem that my life has been awful and full of hardships that don't seem to cease, but it's not. There are a lot of things that are positive about my life, but this post will focus more on the difficulties of living with an autoimmune disease and juvenile arthritis. 

I won't be talking about invisible disability and my experiences because that is a topic I will discuss next Thursday. I considered doing it here, but both of those posts are way too long to be condensed into one.

In my case, my condition is pretty serious. Let's start when it all began.

Infancy:

I don't remember much from when I was a baby (like most people do), so this information is mostly from my parents and fuzzy memories of mine.

My mother first noticed something was wrong when my family and I had been taking a photo and I had a band around my wrist. The band wasn't there for long. When my mother next looked at my wrist, it was gone. She thought she was crazy, then she looked at the photo and concluded that she knew what she saw. I was about four months old at the time. In case you are curious, the band was a ring of migratory inflammation.

During a routine check-up (with an adult doctor not a pediatrician), my mother brought up the band she had seen on my arm. The doctor shrugged it off, telling her that she was just an overprotective worried new mother (never mind that she had my older sister about 9 years before me).

Then small incidents kept happening. 

When I was a baby, I used to tense up. Whenever my mother had to change my diaper, my knees would be tense and she'd have a hard time changing it, to the point where she would have to tap me behind my knees to get me to straighten and loosen them.

I have a family history of autoimmune disease on my mother's side. One day, my grandmother came over to our house. I had been playing. My mom and grandma began talking, my mother explaining how peculiarly I acted and how I barely walked, and my grandma told her that she needed to take me to the hospital.

She did. The doctors tested me for many things, including cancer (I don't know everything they tested me for; my mom doesn't remember). At nine months old, I got my diagnosis.

After this, I went on chemotherapy. Not much else happened that I actually remember, so I'm going to skip to my childhood.

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Childhood:

I can distinctly remember two times where I got a flare-up for reasons other children would typically be fine. I think the first one I can fully remember was the most painful out of all the ones I've had.

Flash forward to 2009, one of the best and worst years of my life. Why do I say that?

When I was younger, my family I would go out of town for medical care every three months. It was Spring 2009. I was five. At my appointment, we were informed that I was pretty much the picture of health, so I was taken off chemotherapy. 

For my family, this was a big deal. Not only did it mean that I was off medications, but it was also the first time I didn't have to take them since I was pretty much born. As celebration, my parents planned a trip to Walt Disney World.

Nothing went wrong on the trip. It was fantastic, actually. For most of that trip I either rode around in a stroller or was carried by my parents or sister because my legs couldn't handle the distance (Walt Disney World is about 25,600 acres). I ended up getting a heat rash during that trip, which wasn't fun, but at least I wasn't on chemotherapy.

Let's now get into why it's one of the worst years of my life.

What normally happens when a child turns 6 years old? Chances are you thought about school. You'd be correct. I started school and the first few months were great. I successfully made three friends. Then, I had to quit. 

I didn’t make it to Thanksgiving break. Around the beginning of November, I had been hanging out with my three main friends. One of them had gone to school sick. Their mom probably didn’t know, but they went to school with the flu. 

I ended up catching it. It messed me up. I don’t know if it was the same flu, but that year was an H1N1 pandemic (it wasn’t as global as the COVID-19 pandemic). All I know is that I was ill for a while. I had to quit public school, and I never went back. 

My flare-up from the flu impacted my life for a few years. I wouldn't have been able to keep up with school had I gone back. I would've fallen behind very quickly. Because I got such a bad flare-up, I went back on chemotherapy (my chemo-free childhood days lasted less than six months). 

This set me back on my schoolwork. I may have started first grade at 6 years old, but I lost two years where I couldn't do anything but travel, lay in bed, eat, go to bed, stay up all night, and watch TV. I lost two years where I couldn't focus or write. My hands just hurt too much to sit down and even do math. I think that's one thing that is the most frustrating. 

I think I fully restarted doing schoolwork when I was around 8 or 9 (at home of course). I still haven't graduated from high school, but I will at my own pace, which is slower than most people, but it is what it is. 

As a joke, I like to tell my family that I'm a first grade dropout, even though I'm a homeschooled high schooler who is intending to attend college.

The other flare-up happened because my family and I had gone to the park. I couldn’t really go on the monkey bars by myself (I wasn’t strong enough to hold myself up and my wrists hurt often). I remember I wanted to try. Every other time, my father would help me across by holding my weight. 

I didn’t want help, so my parents let me try. It didn’t go well. I fell. It wasn’t that far off the ground (standard monkey bar height for parks is five feet). Nonetheless, it caused my body to have a bad reaction. I was already on chemotherapy medications, but this incident caused me to be on them for an extended amount of time. The fall worsened my flare.

As a child, I didn't have medical mobility aids. I did have mobility aids, but not like a wheelchair or anything like that. I rode in strollers until I was around nine or ten (my parents bought this nice stroller that was long enough for me to stretch out my legs because it had a plastic foot rest thing; it kind of looked like a stroller for twins, except it was just for one child; I loved that thing). 

I also rode in shopping carts a lot when I was a child, and even when I was a tween. My parents bought a red wagon that was primarily used when I was a tween, since I didn't want a wheelchair. When I was younger, my parents and sister would switch off carrying me.

I remember there was one time where I used a wheelchair. I was maybe seven. My family and I (it might've been just me and my mother, I don't remember) had gone to Walmart. Upon entering, they have public wheelchairs, so my mother pushed me in one. This day was the reason I refused a wheelchair later. 

When I was younger, I was incredibly self-conscious (I still am, but not as much), and I just remember the looks on the other customer's faces. They were full of pity, and I hated being looked at. 

It made me feel as if I was constantly in the spotlight. Children looked at me perplexed as well, and I hated it. This is the main reason why I don't have a wheelchair or other mobility aid (plus, I don't need one right now).

To clarify, I know that chances are that no one meant anything by the looks, but it just made me feel different and not normal. I could be completely wrong, but I feel as if people look at disabled children with more pity than older disabled individuals. 

My view could be completely flawed, because I'm only a teenager, and I haven't used a wheelchair since that grocery store visit. That's just my current perception, which is subject to change.

To be honest, refusing a wheelchair probably made my family's lives more difficult. My parents bought many different things to push me in as I got older and taller. My sister carried me a lot more than I would've preferred, and probably more than than she would've liked (though she never complained).

I had small flare-ups here and there, but some I don't really remember, so we've now reached my teenhood.

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Teenhood: 

My teenhood has been pretty slow and easy compared to my childhood, though there have still been struggles. Since I've been a teen I've been on chemotherapy once, almost twice, which is a significant improvement from when I was younger.

I'm not on medications right now, but I'm in the middle of a flare. I have been since December 2019, though sometimes I forget it's even a thing. That's the problem when the pain fades. 

You begin to forget that your joint was ever bothering you, which may lead you to overwork your body or ignore your joint altogether because you forget about it. My flare has definitely lessened since last year, but it's definitely still there. 

Last year, four of my joints hurt. Now, there's only one occasionally, but the main thing that has remained is swelling and inflammation. I mentioned this a while back, but my left elbow doesn't straighten to 180 degrees. It's definitely at an obtuse angle, but my mobility on it is limited. 

I can bend it all the way, but straightening it all the way is downright impossible. Because I can't fully straighten it, it's been perpetually bent for the past year and a half. At the moment, it's shorter than my other arm.

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Some days, it's hard to get out of bed. Eight times out of ten, it isn't because my eyes are too tired. Usually, it's because my body has to physically wake up. Sometimes, it even takes a few hours. Thankfully, last February I got a mattress that has a remote, which means I can elevate it. 

It has helped immensely in helping me get up. In the past, I'd have to put pressure on my wrists and arms to get out of bed. Now, I don't have to. I can just reach over and grab my remote when I grab my glasses and elevate the mattress just enough for me to stand. 

In my opinion, the worst part about having an autoimmune disease isn't the pain. I've learned to deal with that. Pain is fairly easy to handle. The worst part is realizing that you sometimes can't do what you love to do. When my dominant wrist hurts, most times I'm not upset because of pain (though sometimes the pain will get to me).

My biggest fear (even larger than clowns and being trapped and locked in a space) is using my hands so much that I'll never fully be able to use them again. It's a fear that has petrified me since I was a child. 

There were many times where I couldn't draw because my wrists hurt so bad and they wouldn't function. As someone who loves drawing, painting, writing, and wants to become an author-illustrator, you can imagine how terrifying this is. 

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I don't think much about my arthritis in my every day life. I never forget I have it, but at the same time, I do. It's a confusing paradox I have a hard time explaining. I've thought more about my arthritis for the past year, because I'm older and need to get a handle on managing it and since I've started this blog.

Even though I don't always think about my arthritis, it impacts my everyday life, whether I consciously think of it or not. Most things I've just grown accustomed to, so it's just a part of my life now. Here are some examples.

I have arthritis in my wrists, so I can only open certain types of kitchen containers due to lack of strength and wrist strain/pain (I have pretty weak wrists). I have a hard time with lidded glass containers (specifically Pyrex glass containers). Sometimes I can open mason jars (depends on how tightly they were closed because the coldness of the fridge naturally tightens lids). 

I can't open cans. I hate cans with pull tabs, because even if I'm able to force the pull tab up, I can't pull it off. I wasn't able to successfully use a manual can opener until I was about 12-14, and even then, the twisting motion hurts my wrist, so I don't use a manual can opener. Around a year ago, my mother bought an electric can opener, and honestly, that is one of the best inventions ever. Whoever had that idea was a genius.

As I mentioned in my very first post (linked here if you haven't read it: What No One Tells You About Arthritis: Introducing Me (opens in new window)), I have arthritis in my jaw, which makes eating certain foods difficult. I have to have my apples in slices because biting an apple hurts my jaw. My jaw physically cannot open wide enough without pain to be able to bite an apple. My jaw tends to hurt whenever I yawn, mostly because my jaw hurts when I open my mouth too wide. My jaw only opens so far before it begins hurting. 

I have to eat baby carrots because I can't just pick up a standard raw carrot and eat it like that. As a child, I would hate going to the dentist, solely because my jaw would always hurt after. I also was never a fan of going to appointments where my joints would be checked. You'd be surprised at how much your joints can hurt after they're bent, straightened, and basically manhandled by a rheumatologist, even if your joints didn't hurt when you arrived there.

I constantly leave my bathroom door cracked, that way I can just lightly push it open because my wrists don't like the twisting motion required for turning certain knobs (privacy door knobs), and I only close my bedroom door if I'm sleeping or by myself. Otherwise, even my bedroom door is cracked. 

I have a difficult time opening the front door to the new house I live in because there's an extra tab that sticks out that must be pushed down to open the door (entry door handleset). 

I have a hard time walking up steep inclines because my legs can't physically handle them. The thing I dislike most about my new house is that the driveway is on an incline, but luckily, it isn't too steep for me to handle, and I've gotten used to it. 

I have a difficult time standing in lines, depending on how long the line is. I will constantly have to shift my weight to my other leg even if I'm having a good day.

I can't pick up large skillets or sauté pans and have a hard time picking up anything involving cast iron. Large skillets are heavy, and my wrists aren't strong enough to carry them even when I'm using both of my hands. Sometimes even utensils that are too large can also be too heavy for my annoying wrists to handle. 

Another thing is the constant popping. When I was a child, my knees used to get hit hard during flares and so some of the cartilage in my knees dissolved due to the inflammation. This causes my knees to constantly pop and crackle, though there's no pain from this, nor has there ever been. To be honest, there are times where my joints would probably sound like a "little old lady's," but it is what it is. 

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I mentioned toward the beginning of this post that I didn't want to get a wheelchair because of the looks I got when I used one once.

To show just how much being looked at bothered me when I was a child, I will give an example that has nothing to do with wheelchairs or any of that. 

I've essentially been homeschooled for my entire life (save for the 3 and a half months of public schooling I had when I was 6), so my schedule was almost always flexible (it still somewhat is). If we had to go shopping at the grocery store in the morning on a Wednesday, then that's exactly what we did. 

Every time we did, I always used to get looks from people, as if I was ditching school or something. I don't recall ever being told anything (if anything, it happened once; I think I was asked by a cashier if I was supposed to be in school), but that's just what I thought growing up. 

I can't count how many times I was out in public when I was "supposed to be at school." Summer was my favorite season when I was younger because it was the only time where I could be out in public with my family on a weekday and no one would bat an eyelash. They'd barely even look at me, which I loved. That was really the only time of the year where I felt "normal," like I was just a normal kid going out to the store or library. 

Growing up, I never liked being different. Obviously, I knew that every person was different, but I didn't like looking obviously different, such as when I used a wheelchair one time, or when I looked as if I was "ditching" school. I never liked being stared at, because it made me feel as if the spotlight was on me, even if it wasn't. 

I especially didn't like being looked at by adults, and I think that it somewhat went more than the self-consciousness of them being incredibly older. As I mentioned before, I've noticed people have a lot of pity for children with medical conditions. 

Personally, I don't like pity, but I understand why it happens. It's a natural thing, but that doesn't mean I have to like it or search it out (trust me, I don't; that's the last thing I would do).

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I'm going to do my best to explain what a flare feels like, regarding pain.

Imagine a stovetop. On that stovetop is a metal pan or pot (take your pick, it doesn't really matter). You're cooking and you accidentally touch the pot. Your skin immediately burns and you might even flinch in pain from the sudden burning. 

Now imagine you get a burning pain similar to that in one of your joints in the middle of a flare. Maybe you've used your wrist to write or draw too much. Maybe you slept on your hand and it causes pain. Maybe your knee feels as if it's been doused in boiling water.

One moment your wrist is fine (it could be any joint, not just your wrist, but that's just the joint that tends to affect me the most), and the next there's a sudden burning pain. You feel as if parts of your body are on fire. 

It feels like you've eaten a really hot chilé, and it's burning through your body. It feels like your joints (usually not all of them, though there are a few cases) are constantly being touched by a hot poker. It makes you feel as if you're being burned at the stake. Sometimes the burning makes it difficult to sleep. 

There's a couple things that are different between a burn from a stove and an autoimmune disease flare. That would be a potential burn scar (which is arguably more tolerable than the second difference) and the fact that the pain from a burn fades. Usually the burning from an autoimmune disease flare will fade, but it'll take longer. 

Sometimes, it lasts a few hours or a day or two. Other times, it'll last an entire week or even a month. Maybe even a year if you're unlucky. Even when you aren't in the middle of a bad flare (barely able to walk or do much of anything), the pain still comes back every now and again just to remind you that your body hates you for hurting it.

It's a hard feeling to explain, but this is the best example I can think of. It's the way I kind of explained it to my mom when I was a child (which made her realize what her pain actually felt like as well), though my example here is more imaginative and descriptive than just approaching my mom at around 4 years old and telling her, "It burns," while massaging my arms. There are more symptoms than that during a flare such as extreme fatigue, joint stiffness, and brain fog, but this one is the easiest to give an example of. 

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Some people may ask or wonder what I do to mentally cope with my arthritis. This is a complicated question to answer. I definitely cope because of the meaning of the word, but I've never thought of it as that. Let me try to explain to the best of my ability. 

As a baby and a young child, I believed that the pain I felt was normal. I know that I for sure didn't like it, and I know that as a baby, I would sometimes scream bloody murder. 

However, on a certain level, I thought every child felt the way I did. It wasn't until I was a bit older (around 4-6) and could remember hospital visits and my mother explaining my condition in more depth to me that I realized this wasn't normal. That my body was sensitive and reacted strongly, most times to things that would seem inconsequential to a lot of people. 

There are memories I have of excruciating and debilitating pain, but it's never really been something I spend a lot of time coping with. I don't really have a memory of no pain. All my life has pretty much been full of it. It's been a roller coaster of emotions, pain, and occasional sleepless nights, but day after day I deal, because no one else can do this for me.

I think arthritis and disability has made me a different person, even though I was still a baby when I was diagnosed with it. I'm wiser, stronger, and can do things at pain levels other people probably couldn't. It has made me appreciate the small things in life. Who cares if I can't do high contact sports. I can dance. 

Who cares if I couldn't really be a doctor because I know my health wouldn't be reliable (getting sick fairly easily and wrist issues don't mix well in a medical path). I can be creative. I can be imaginative. I'm a writer, artist, dancer, photographer, and a reader, and those things will never change, no matter how much my joints hurt.

It doesn't mean that it isn't frustrating, or even depressing. It can be. There are times it definitely is. I'm not happy all the time, but even non-disabled, 100% healthy people aren't happy all the time, and that's okay. I'm not always a ray of sunshine. In fact, while I can act optimistic and I can be optimistic around people, my mind is the definition of pessimistic. 

Even now, my inflamed left elbow will annoy me. It'll depress me, because to me, it doesn't feel like it's getting better. My family will have to convince me otherwise. I hate thinking about my arm, because then I know that all I'm going to succeed in doing is dwelling. I hate dwelling. It drops me into what feels like an inescapable black hole. 

I find that sometimes the most frustrating things in life are the things you have no control over, because there isn't much you can do--especially in that moment--to change anything. As I child, I couldn't do a lot. That's one of the most depressing things because I couldn't do anything to change it.

When you can change how a situation happens, it's freeing because you know that you don't have to keep doing that. You know that you can do something to change whatever situation you're in. You have control. But when it's something you didn't cause--something you have no control over--there's nothing you can do. You can't tell yourself, "if I just do this, then this won't happen." 

Sure, there are things I can do now to manage my arthritis that don't entail being on medications 24/7, but as a child, I couldn't do anything. Even now, it's sometimes difficult to manage because there's so many triggers, it isn't even funny. Sometimes, that can get overwhelming. 

I know that I used to think about my arthritis occasionally, but I think on a certain level, the severity still went over my head. Not a lot. I knew what was going on. I knew my body was fragile, but it wasn't something that 100% set in until I got older. Until I got interested in more things that I realized what this meant.

It makes you feel trapped. At times, it can make you feel worthless and lazy. It can make you want to push yourself more than your body can handle. It's a horrible feeling. That's one of the worst parts about having arthritis. That's one of the worst parts of having autoimmune disease. 

It isn't the pain that comes with it. It's the guilt and the occasional feeling of worthlessness. It's the feeling that you'll never be able to get where you want to be. It makes you feel as if you're constantly getting backed up and having to start at square one. 

In order for me to do what I want to do, I have to push myself, and to be honest, sometimes I push my body past its limits, even though I know them. Sometimes I push through the pain, because I know that the minute I stop, I won't be able to continue. I won't be able to use my hands (usually I push my joints the most when I'm drawing). 

Burning pain will course through the top of my hands and the trapezium/first metacarpal joints (base of thumb and just below that) in my wrists if I overwork them, and the pain can be so extreme, I can do nothing but lay in bed and cry and think, which is honestly the worst time for me to be thinking. 

I think about my future. I think about my hands. I think about art. I think about everything my arthritis has set me back on. But the most terrifying of all, I think of a world where my hands don't work. Where my hands are so damaged, I can barely hold a pencil, much less put it to paper. I think of a world where I can't do what I want to do. A world where I can't do art. The scariest part is that the world I think of is this world. This life. Not an alternate reality or dimension.

I fear not being able to do what I want to do, which sometimes even makes me fear doing art at all. I never want to give up on it, but I become so afraid of it, that I don't want to do it. I hate it. I hate fearing the thing I love to do. 

It doesn't do anything to benefit me, but whenever I put a pencil to paper almost on a daily basis, the slightest pain in my wrist can set off anxious feelings in my mind. It begins thinking of worst-case scenarios. It begins thinking about the things I listed above. 

At the end of the day though, this is my body to handle, and even though I've had many ups and downs, I'd say I'm fairly decent at managing it. It's hard, but it's necessary. I may not be able to open certain containers or do certain things, but so what. I have limits, and that's okay. I can't do what some other people can, and that's okay.

I may not be able to do some things, and many I can't do for a long period of time, but at the moment I'm writing this, I'm happy, I'm alive, I can walk, I can draw, I can dance, and my pain is minimal. And that is one of the best places to be. 

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

Until next time,

Lexi K🖌