Guest Post: What Is It Like Having a Sibling With Juvenile Arthritis?

Welcome back to Musings of an Arthritic Artist!

Today I'm posting my first guest post. This post will be narrated by my older sister, Samantha, who was in elementary school when I was diagnosed with polyarticular JIA at nine months old (Juvenile Idiopathic Arthritis that affects 5+ joints), so she's experienced a life I have not: having a sibling who lives with autoimmune disease/juvenile arthritis/chronic illness/disability (it's a mouthful, I know).

This is a new perspective for me as well. Seeing as I'm the youngest of two, I don't have any younger (or older) siblings who have been diagnosed with anything. 

Most of what she's going to be writing is new for me, seeing how I've never asked her how her life has been impacted by it until a few months ago when I asked her to do this for me. 

I will include links at the end of this post about how arthritis affects siblings and family, if anyone is interested in reading any further information.

Without further ado, let's get into the post!

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

I am the older sister of a kid with polyarticular juvenile idiopathic arthritis. Well, she isn’t a kid now, technically, but to me she’s always going to be my kid sister – and she can just accept that already. 

I was two months shy of being 9 years old when she was born. I was just about to finish 3rd grade. My life completely changed when she was born – and then it completely changed again just nine months later.

Being an older sibling of a child with chronic illness is not the easiest job in the world. It also isn’t the hardest. It fits somewhere in between because it brings a lot of new challenges, but in time it becomes what I call a new “normal”. My normal isn’t the normal of my neighbor or my friends or other members of my family.

There are a few things that I have definitely learned – through experience and observation – over the last 18 or so years. These include caution, assistance, sensitivity, perception, normalcy, and accessibility. There are likely some other things, but these are the main ones that immediately jump to mind. I’d like to talk about each of these, since they’re all pretty important.

CAUTION

As a sibling of a physically disabled sister, I learned quickly about the need for extra caution. I wasn’t the rowdiest kid growing up. I could often have a television be my babysitter for several hours. 

I liked to play and run around outside, but I wasn’t a rough-housing kid. Quite frankly, I couldn’t be. My sister already had so much pain that adding to it in the name of fun definitely wouldn’t be appreciated. Of course, it was never even an issue. 

I think I was rather perceptive as a kid and I realized pretty fast that my sister wasn’t going to be a standard kid by most peoples’ standards. I had been in enough hospital rooms and doctors’ offices to know that. I’d seen and heard about some of the tests medical professionals were doing on her to figure out what ailment she had – as a baby. 

I could see it when she could barely move even as a toddler. I could see it in how she spent most of her time lying around instead of crawling about and getting into trouble like the babies and toddlers I’d seen on TV. So I also learned that it wasn’t just a baby that needed caution exercised – it was this entire kid. 

I saw the welts she got from scratching an itch or softly bumping into a wall – the kinds of bumps that would make someone think she was abused (far from it, let me tell you). The lightest irritations and childlike accidents could be big deals. 

A fall on a playground could worsen a flare. Wrestling, extensive tickling, and anything too physical were out of question. Even now I occasionally look around to make sure there’s nothing extra I’ve done that could be harmful. I’ve had to be cautious about the pressure my hands exert and I don’t even have a heavy hand. Nonetheless, I’ve done it, no questions asked. That level of caution will likely never go away. 

EXTRA HELP

This is the part I occasionally struggle with. The standards for me and for other people are far different from my sister. The tools I use in the kitchen with ease are sometimes things that she can’t use at all. 

It’s largely been my job to assist when these kinds of struggles arise. When a jar needs opening, when a can needs a handheld can opener, when a food container has a lid that isn’t easy to open – I’m needed. 

This is where I struggle, because truth be told my sister has taken a little advantage of this, and also because I forget how much of a struggle some of these actions can be. As someone who has been an adult for a while, I forget that just being older doesn’t automatically mean you can do something. Nonetheless, this is an important aspect of care that in many ways I’m used to by now.

HEIGHTENED SENSITIVITY

What some people may not know is that living with chronic pain can cause heightened sensitivity when it comes to emotions, particularly things like distress and stress. As a result, it is sometimes necessary to be hyper-aware of the words and tones you use with people with chronic pain. Emotional triggers can be just as harmful as physical injuries, even though the result is less visible. 

I’ve been known to cross some lines in arguments or not think about how a movie scene may impact my sister. We’re siblings, so we frustrate each other and we have gotten really comfortable with each other. 

This means my heightened awareness isn’t always at the optimal level for my sister’s needs. Just because something doesn’t bother me, it doesn’t mean it won’t bother her. Being aware of this is very helpful in being a long-term caregiver.

EXTERNAL PERCEPTIONS

This is honestly one of the most frustrating things about being the sibling of a person with an “invisible” illness. It isn’t about the actual illness or how you deal with it. It’s all about how people outside of your circle view you and your sibling. Too many times I’ve been harassed or seen my sister harassed or misunderstood – because her illness isn’t noticeable. 

Since she doesn’t have heavy-duty braces, a prosthetic limb, or a wheelchair, everyone assumes she’s fine. Everyone assumes that if we’re in a handicap parking space, we’re being jerks. Everyone assumes that nothing is wrong and we’re taking advantage of something we shouldn’t. 

So many times this has made me angry. So many times my family has had to educate others on how not having a wheelchair is in some ways harder, because her legs get more tired with long distance walking. She still has to put in all the physical work and exertion to get where she needs to go, even if her body says “I have limits.” 

Just because you can’t see an illness, doesn’t mean it’s not there. From one human being to another, if someone has official government-issued handicap plates, please leave them alone even if they “look fine” to you and your eyes. They likely do not fit within your definition of “normal” and don’t deserve to be harassed as a result.

Sometimes even people I know have misconceptions about what I have to do, and why I do the things I do. They don’t understand the precautions I take during a pandemic, the precautions I take in checking if some movies or shows might be distressing, or the level of aid I provide. They assume I’m coddling my sister or letting her take advantage of me. 

It isn’t malicious in nature, they just don’t understand the full extent of my sister’s condition and the limitations it imposes. Honestly, no one knows what is needed better than a chronically ill person and their closest loved ones. So please, if you haven’t been in my shoes or those of people like me and like my sister, let us do what we need to do.

DIFFERENT “NORMAL”

One thing that is easy to forget, but is also great is the way that something you never expected, just becomes your new normal. I didn’t expect my sister to have her condition. I didn’t expect all the challenges I would get as a new big sister. 

Nonetheless, I adapted, my family adapted, and my sister adapted. Instead of seeing what we can't do, we’ve been able to see more of what we can do. I notice certain things more readily than I might have if I wasn’t the sister of a chronically ill kid. I think differently than a lot of people I’ve interacted with. 

I see travel, work, accessibility, and assistance differently. I always have an annoying habit of being overly optimistic and sunshine-filled, because of how many bright sides I’ve had to find along the way. 

Now, it is so normal and I do it so often, that it even drives my sister crazy. But that’s okay, because it works. Even when she’s annoyed at me, it often brings laughter as she asks why I’m so annoying and so peppy. That just means I’m doing my job right.

I’m more aware of accessibility when I go out. I think more about potential distances when parking or planning excursions. I know the importance of making sure good shoes are available. I know the importance of maintaining a healthy diet. 

I know far more about diet and nutrition than most people my age who haven’t studied those topics extensively. I pay more attention to the design of household tools and items than many people do, considering if it’s arthritis-friendly or not.

CONCLUSION

I’m the older sister of a wonderful and irritating kid-who-isn’t-a-kid. My experiences were different growing up. I spent a lot of time doing homework in hospital rooms. I spent a lot of time being hyper aware of sensitivities. I spent a lot of time planning and evaluating situations and places to be as helpful as possible. I’ve given more piggyback rides than I can count to help when sore legs occur. 

I’ve spent more hours giving pep talks and drying tears than I can count. I’ve spent a lot of time being frustrated with people who don’t understand what my sister’s disability means for her and how to help her adapt to things – looking at you, public school!

I get frustrated sometimes. I get overwhelmed sometimes. However, caring for a chronically ill sibling quickly develops you into a very aware individual. As much as it gives you stress, it also gifts you knowledge and experience that some people take a lifetime to learn. 

I’m grateful for my knowledge, for my experience, and even for my pain in the butt sister. I’m probably never going to 100% step out of the caretaker role I adopted after her diagnosis, not even after I eventually move away. It’s not a switch that can be turned on and off. 

Every day, every hour, I’m not just a sister. I’m a caregiver. I’m a confidante. I’m a motivational speaker. I’m a role model. I’m a line of defense to prevent unfairness from impacting potential success. I’m an innovator – finding ways to help my sister adapt when needed. 

But at the end of the day, I’m still a sister and I wouldn’t trade my experience with it for anything, except the ability to take the pain for myself so she wouldn’t have to deal with it every day.

___________________________________________________

Hey! It's Lexi again! Thank you Sammie for agreeing to do this, though it isn't like you had much say in the matter. 

Just kidding! You could have refused if you wanted to, but I knew you wouldn't. It you had, you would've had to contend with my complaining, and I know you wouldn't have wanted to deal with that. Love you! 

My sister has a blog of her own where she reviews books and occasionally movies. You can check out her blog here: The Real World According to Sam (opens in new window).

She is also a Comics News Staff Writer over at ScreenRant. You can read her articles here: ScreenRant Author Profile: Samantha King (opens in new window).

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

Until next time,

Lexi K🖌

Further information: 

Arthritis Foundation: Impact of Juvenile Arthritis on Siblings (opens in new window)

How Arthritis Affects the Family (opens in new window)