Juvenile Idiopathic Arthritis

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    Carly Fox

    Why Identifying as Disabled Is a Complex and Personal Journey

    Unfortunately, becoming disabled is not as easy as someone coming along, handing you an accessible parking pass, and sending you on your way. Becoming disabled is a complex, deeply personal journey that rarely has one tipping point. For chronic, complex, and mental illnesses, even with diagnoses — for those of us privileged enough to have access — you’re usually never told you’re disabled. You’re told you have ADHD, PTSD, fibromyalgia, JIA — but no doctor comes along and says you are disabled. (Take that, medical model.) I hadn’t really considered how I became disabled until now. I assumed I began identifying as disabled when I was diagnosed with juvenile idiopathic arthritis at 16, but that’s not true. I only started considering myself diagnosed a year and a bit later. And as I thought about it, my whole disability experience unraveled to show me that I was disabled long before that JIA diagnosis, or any diagnosis for that matter. I just never knew enough about disability to consider myself disabled, and I held a lot (a lot!) of internalized ableism. So, let’s unravel my disability experience together. I was a deeply anxious kid. While I still did well in school and with others, I was always feeling sick and wanting to stay home. Then, I was a deeply in pain kid, and my above average height at the time made “growing pains” an easy excuse for doctors to dismiss me (shout out to the arthritis pals, who all went through the exact same thing.) I was always coming down with something and never felt as healthy as my peers seemed to be. At age 11, I was diagnosed with generalized anxiety disorder and depression. Looking back, it seems strange I knew how to ask for help so young. I deleted the part where I wrote that I didn’t feel shame — I absolutely did, and hid my diagnoses and medication from my family aside from my mom for years. (Shout out to Mother Fox!) At 11, my anxiety and depression kept me in bed and riddled my attendance — but I didn’t consider myself disabled. At that time, I don’t believe I had any real understanding of what disability meant, besides wheelchairs and the “special ed” kids we would volunteer with. At age 13, my anxiety and depression were joined by disordered eating. Besties, I know. It was rough. And it was hard to beat. And it came back a few times. And I won’t rule out another relapse. And at age 13, with anxiety and depression and disordered eating that made it hard to go to school at all, I still didn’t consider myself disabled. In fact, I probably considered myself too cool for it — consider this your daily reminder to condemn 2014 Tumblr and its current Instagram-fast fashion renaissance from hell. At age 14, my chronic pain and constant illnesses began to accelerate, and teachers began to hate me for my poor attendance. My peers would make fun of me when I returned after multiple days off, and someone gifted me a copy of Ferris Bueller. Maybe I played it off like I was ditching, but I was in pain, sick, and confused. But I still didn’t consider myself disabled. At age 15, after becoming exceptionally bad at math (a new development), I went to my guidance counselor and told her I was going to drop out – a cry for help if I’ve ever heard one. She said, “Numerically, your grades are too high to fail this semester.” I swear, guidance counselors have to make a commission every time they get a kid to drop out. Fortunately, I went back to the doctor who had diagnosed my anxiety disorder and depression, and I was then diagnosed with ADHD. ADHD was never really explained to me (is anything ever in our overwhelmed healthcare system?), but a medication finally helping me cope with an illness was a significant tipping point in my disability journey. I was able to get my mind back on track, and slowly build up coping skills to function in a way that suited my life again. At age 15, my PTSD began. This is the one thing I still struggle discussing, and the one disability whose full history I’m going to mostly keep to myself for now. While I wouldn’t be properly diagnosed until age 17, I had never been more disabled in my life — and yet, I still did not consider myself disabled. (One day we’ll talk about it folks, one day.) At age 16, I was diagnosed with juvenile idiopathic arthritis. You’re probably now thinking, “This is it, she’s disabled now, we’ve done it!” If this is you, thank you for the emotional involvement in this retelling, but we aren’t quite there yet. While something deeply transformative happened in that doctor’s office when the rheumatologist poked at all my joints and I knew my life was about to be significantly altered, I still didn’t consider myself disabled. Instead, I considered myself chronically ill, which is a differentiation I still have to explore and learn more about. Disclaimer: you are valid if you identify as chronically ill. You are valid if you identify as disabled. You are valid if you identify as both. There is no finite amount of validation here — it’s not pie. At age 17, I nearly dropped out of school (again). My body was practically falling apart, and I just couldn’t keep living my life how I was; I couldn’t keep up. I was on near-bedrest for weeks. After that, I couldn’t return to school. Instead, I ended up meeting an itinerant teacher once a week, teaching myself a few courses, and petting a lot of therapy dogs at the public library I knowingly arranged to meet my teacher at — disability excellence, folks. I was also so lucky to have understanding, albeit pretty confused and concerned, teachers who went out of their way to accommodate me. My band teacher let me show up once a week in the mornings, and I went to a literature studies course right after those band practices. And as I was negotiating all of these accommodations and explaining my situation to those involved, I began to start using disability in my vocabulary. Soon enough, I was calling myself disabled. Disabled, disabled, disabled. And for good measure, at age 18, I transferred into adult care and was diagnosed with fibromyalgia. I did not have the heart to leave fibro out of here, narrative flow be damned. So, there you have it. Six years after the first diagnosis, I finally identified as disabled. Some people will have their personal preferences to not identify this way — which is totally cool — but for me, it opened doors. Most people understand that they don’t understand disability. They will (sometimes) listen to your experiences and what you need. (Or maybe they’re just nosy. Whatever works.) When you identify as disabled, an even wider community with shared experiences opens up. More resources are available. More accommodations are considered. More things become possible. A lot of people ask me if I think they’re disabled. And while it is kinda weird for me (I don’t believe myself to be some kind of disability fairy godmother), I understand where they’re coming from. Disability is confusing. And overwhelming. And personal. So, sometimes it’s easier to seek external validation of your disability identity than to find that validation in yourself. For anyone out there wondering if they’re disabled, or if they’re disabled enough — that’s your call. Sorry. Only you know how your disability, or illness, or disorder, impacts your life. No one else out there can make that call for you — and no one else out there gets to judge who is and who is not disabled (in the social sense, please don’t go commit tax fraud or something). The takeaway here is that there is no one way to become disabled. There is no set timeline or list of requirements you have to meet. If you’re wondering if you’re disabled, I would tell you that you probably are, but that would reinforce my alleged disability fairy godmother status. Instead, I’ll ask you this: do you feel disabled? Do you feel as though your ability to function is negatively impacted by your health? And how would you feel if you did identify as disabled? If you felt relief, closure, or peace, it might be time to look at your own disability journey. Depending on how that goes, either try again later, or welcome to the club. I’ll see you around.

    Carly Fox

    Losing Remission and Finding Gratitude With Arthritis

    Arthritic Carly is back, folks! After nearly six months in remission from arthritis, my joint inflammation is back, and my immune system is ready to attack. My main challenge now is figuring out how to tell everyone the news without being subjected to pity. (If someone throws me an ironic celebratory party, though, I will probably attend.) It’s hard enough to come to terms with my nearly six months of joint inflammation remission coming to an end, but it’s even harder to share this news with others. After several months in remission, it feels as though I’ve forgotten how to be arthritic, and those around me have forgotten I’m disabled. As with many other complex chronic illnesses, I’m facing uncertainty. I’m uncertain about whether I’ll be able to get ahold of my old rheumatologist, I’m uncertain about whether I’ll be able to maintain my pace at school and work, and I’m uncertain about whether I can keep doing all of the things I love. Above all, I’m uncertain about how to act, how to tell others, and above all, how to deal with others’ disappointment that my remission is over. Those closest to me do not feel pity. Their empathy echoes my uncertainty, as we both are uncertain of what is to come but know we must brace for the worst. Those who are not so close and not so “arthritis aware,” though, might be a little more unsure about what this means for me ( literally – like what the word “remission” means). While many of my friends and acquaintances have been fantastic listeners and do their best to understand my disabilities, most people I know don’t know arthritis can go into remission — let alone that remission is not forever. I won’t fault them for that – I also forgot remission doesn’t last forever. The strangest phenomenon has happened to me ever since I became disabled at 16: gratitude where gratitude would not conventionally be. As I feel overwhelmed by planning for my once-again-arthritic future, I’m grounded in gratitude that I entered remission in the first place. When I was diagnosed with juvenile idiopathic arthritis at 16, my pediatric rheumatologist found inflammation in nearly every joint in my body. As she poked and prodded, and as my twin and my mother looked on, I began to recognize the extent of my arthritis and began to feel angry that I and others allowed it to progress that far. At 16 years old, I never believed I would enter remission. Before I go further, please know that remission is not earned. You can change your diet, your habits, and your lifestyle and still not enter remission. Remission is not a value judgment of your worth as a patient, as a disabled person, or as a human – it just happens, and no one knows why. What I can say about reaching remission is that when I was on certain medications, the far-flung hope of remission kept me going through some really rough times. I lost my hair, my appetite, and my personality – but I never lost hope that my health could get better. And three-and-a-half years later, my health did get better. Remission was fantastic. There is no shame in wanting to be in remission — or in mourning when you lose it. There is also no shame in being disabled, receiving treatment, and asking for help. I don’t believe these things have to be mutually exclusive. In remission, I started my second year of university, aced my classes, rocked my extracurriculars, and fell in love. I had energy and optimism in ways I never had before — and knowing that I was temporarily off of treatment and that treatment worked for me was enough to sustain me in doing things I used to think were impossible. I became a star student and never missed a class. I was a standout employee and never missed a deadline. And now, I’m still doing all of these things — just with active arthritis. Losing remission can make you feel like your world has stopped spinning — like everything comes crashing to a halt. But it doesn’t — life has a (sometimes inconvenient) way of carrying on no matter what you’re going through. Losing remission won’t change who I am — in the same way that having arthritis doesn’t change who I am. I’ll still give my loud, energetic takes in class — I just might be sleeping on my desk in between them. I’ll still love my job and deliver at work — I just might take a break during meetings. I’ll still be “me” — the same way I was “me” at 16 with active arthritis, at 20 in remission, and at 20 with active arthritis again.

    Community Voices

    Increasing anxiety due to covid- do you feel the same?

    The last couple of weeks I've found my anxiety is increasing and I think I know why. (Background: both myself and my bf are immune suppressed, he was shielding, and we've both had all the covid vaccines we can)

    Here in the UK restrictions are being lifted more and more. For example for a couple of weeks now there is no legal requirement to self isolate. Yes that's no legal requirement to self isolate even if you test positive for covid 🤦‍♀️ And as of 1st April you won't be able to get free covid tests either. In fact I think the only people who can get free covid tests are those going into hospital and those who are vulnerable to covid and showing symptoms. It's completely crazy imo, but you know there's nothing I can do.

    So the message I'm getting from the government is "go back to normal". This in itself increased my anxiety. Another layer to add to this is the messages I'm getting from work, social media and people in general is "let's do more, see more people, return to the office, etc." This is feeding my anxiety because my brain is going "it's not safe out there because covid and people are acting like covids over... to your fight, flight and freeze battle stations... ***PANIC***"

    I really don't know what I can do to handle this anxiety because practically speaking there isn't anything more I can actually do. I already work from home and thankfully can continue to do so (the message to return to the office is from top level management. My team however are super understanding and supportive!). We already get food shopping delivered and clean it on arrival. I don't see anyone inside with one carefully considered exception: I sometimes have private trampoline sessions in a big hall with only the coach in a mask there, and they're irregular. My parents have a 2 week extra-precautions period prior to seeing me.

    There is literally nothing else I can do to keep myself safe and ease my anxiety. I suppose all I can do is wait it out and wait for my brain to get used to the new restrictions or lack thereof.

    Is anyone feeling similar?

    #COVID19 #ChronicIllness #ChronicPain #Arthritis #AnkylosingSpondylitis #IrritableBowelSyndromeIBS #Migraine #RheumatoidArthritis #PsoriaticArthritis #JuvenileIdiopathicArthritis #ImmuneSystem #ImmuneDeficiency #Biologics

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    Community Voices

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    Community Voices

    Today my mother brought me my toothbrush into my room because I, a 16 year-old, couldn't get to the bathroom (on my own). The pain from my JIA was so severe, that my legs felt like they burned and every step was one too much. I felt helpless. I cried while I looked to the bathroom, 3 metres away from me, but still unreachable.
    My illness and disability always felt like a burden, like something to overcome, but today-... today felt like another level. I never felt THAT helpless, THAT dependent on others, and frankly, it was quite terrifying.
    So I brushed my teeth over a bowl, my mother held for me and I felt ashamed. I felt so much shame, from being seen like that by my mother. Shame from needing her help with something as simple as brushing my teeth. I don't want her or anyone to think that I can't live my life on my own. I can and I will. Or at least that's what I thought, but today made me wonder if that's realistic. Today made me fall apart and left me with the question of what my future will look like.
    #disabledteenager #helpless #future #ChronicPain #Pain #Shame #struggle #JuvenileIdiopathicArthritis #Arthritis #Family

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    Community Voices

    Update on stuff :)

    Hello all! It has been a while. I hope everyone is doing alright.

    I am in college now, in central NY. It has been quite an experience trying to navigate my health from a new place.

    I just got a new diagnosis: Milroy's Disease. My ankles swelled up and originally I thought it was my juvenile idiopathic arthritis flaring. I called my doctor and she had me go on a double daily dose of naproxen to reduce the swelling. For some reason that didn't work, so she requested that we do a video call so she could see my ankles. She saw the swelling that was going on (more in my right ankle than my left) and she felt like something was off. She had me press on my ankle and see if I left a fingerprint and weirdly enough, it did. In the end, she said she was pretty sure it was lymphedema, but wanted to make sure.

    She sent me to my college's health center for bloodwork and sent me to have an ultrasound of ankles. Crazily enough, the hospital here told me over the phone that "They don't have the proper equipment for that." I was like, "It's just an ultrasound..." But the hospital apparently doesn't have equipment to do sonograms 😅 This concerns me, not gonna lie. I know this is a small town, but I assumed that any town in a developed state like NY would have ultrasound machines. I stand corrected. In the end, I had to shlep across town to go to an imaging center that thankfully DID have an ultrasound machine, and I got one done.

    The scan showed that I have inflammation of the soft tissue (lymphedema) but no synovitis (arthritis inflammation). This was both reassuring and concerning. It's reassuring because that means that my Enbrel is still working and I am still in remission :)) but it concerning because I now have a whole new health condition. It makes me sadder that this condition doesn't have a medication or anything that can make my symptoms go away or put them in remission. I did get compression socks, which are helping with the swelling and some of the pain. It just frustrates me that whenever I make progress in one area, I seem to have something else crop up elsewhere. Why is my body so broken?!

    Anyway, I'll stop complaining. I am doing quite well in school TG, and my other health issues are pretty well controlled. My GERD is flaring a bit (probably because of my food choices here), but my IBS is stable. I've been fatigued, but my doctor encouraged me to exercise when it comes upon me instead of taking a nap, and it's been helping for the most part.

    I hope you all are well and would love to hear from you 😘 Sending love and hugs!

    #Lymphedema #MilroysDisease #ChronicIllness #ChronicPain #MentalHealth #Depression #Anxiety #Disability #chronicmigraine #RheumatoidArthritis #JuvenileIdiopathicArthritis #JuvenileRheumatoidArthritis #Arthritis #Pain #Swelling #relief #College #collegehealth

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    Cat Parkinson

    How 'Freedom Day' Feels as Someone With Chronic Illness in the U.K.

    Monday 19 July was “Freedom Day” in England. Masks will be tossed aside, people will huddle together once more and, as if no time has passed, people will return to a form of normality we have all longed for. But this isn’t the case for many people. Particularly, people who are vulnerable like me. For those identified as clinically extremely vulnerable, the 19th of July signifies a day of dread. Our freedom is taken away recklessly by a government that has continually failed us. It is taken away by people who would rather remove the mild discomfort of covering their face than think of others. It is taken by pure, unabashed selfishness. While everyone was wearing a mask and socially distancing, I felt a new sense of confidence when I left the house. After so long shielding due to my chronic illness, it was comforting to know that the risk of catching this deadly virus was minimized by everyone’s actions around me. I felt confident enough to do things I hadn’t done in over a year; to go to a pub, to meet my friends, to simply go to a shop. But now that comfort will be stripped away. I can already feel myself recoiling from society once more. I’m terrified of the idea of travelling on public transport, of entering a shop or even going to a hospital appointment (something I have to do to live). Some might think I’m being selfish, thinking of my own health over their freedom. Some might think it’s cowardice that I don’t just continue living as if nothing is happening. Some might think I’m wrong. But for one moment, before you throw away your mask, I ask you, what would you do if you were in my shoes? How would you react if you had been told countless times that a deadly virus in the world could put you in hospital, even potentially kill you at the age of 26? What would you do?

    Community Voices

    Hi there 👋🏼

    <p>Hi there 👋🏼</p>
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    Community Voices

    😂this one hits too close to home😂

    <p>😂this one hits too close to home😂</p>
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    Community Voices

    Some Common Misconceptions About My Juvenile Arthritis

    There are a number of big misconceptions that I encounter as a teen living with juvenile idiopathic arthritis; seropositive polyarthritis. That's the type that's most similar to rheumatoid arthritis.


    One misconception is that kids don't get arthritis. Wrong! It's a different kind of arthritis, yes, but it is just as serious, if not more.


    Another is that if I don't have visible inflammation, then I must be either faking or it's not that bad. This is so incorrect! My arthritis is thankfully not visible, but that doesn't mean it's not there. It means that I need to get it under control BEFORE it deforms my joints. Once they're deformed, it's too late. I even have erosions on my bones already, but the average person can't see that. It's only seen through a specialized scan. So the fact that my fingers don't look like sausages is not a reason to say that I'm "just lazy," especially when I'm trying my best under difficult circumstances.


    Yet another is that my arthritis is limited to a very small specific area. It's not! I have it all over the place. It stems from a faulty immune system, so when my joints are attacked, my body doesn't discriminate. My jaw and neck are affected just as much as my wrists or knees or anywhere else that I have the arthritis active.


    Now one that bugs me a lot: Occasionally, when long distance walking is needed (such as amusement parks), I use an electric wheelchair to get around. Otherwise I would be in excruciating pain from my hips, ankles or knees. What bothers me is that people get shocked when they see that I can walk. Needing to use a wheelchair doesn't mean that I can't walk at all! I can, just for distances, this is much more preferable. I do not have the option of just sucking it up and walking long distance or my joints will swell. So definitely a common misconception is that a person using a wheelchair can't walk at all, although many people use wheelchairs out of convenience though they can walk somewhat.

    Comment down below if you also deal with these misconceptions or other ones! Would love to hear your stories. Lots of love to all!

    #Arthritis #JuvenileIdiopathicArthritis #RheumatoidArthritis #kidsgetarthritistoo #MISCONCEPTIONS #Wheelchair #Disability #ChronicIllness #ChronicPain #youdontlooksick

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