youdontlooksick

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    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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    Raise your hand

    for every frustrating comment that you have gotten on your chronic illness journey.
    I'm hoping that if we can laugh at the comments, they'll be less hurtful.

    I'll start: Yesterday my family had a guest over for lunch. I discreetly had my pills in a cup so I could take them with the meal. He leaned over the table to pass something and happened to see the 5 pills in my cup. Raising his eyebrows, he said,
    "Vitamins, I hope?" I shrugged and nodded. Some of the pills were, but not all.
    "So many??" He asked incredulously. "Yes, so many!" 😆
    #Laugh #pills #RheumatoidArthritis #IrritableBowelSyndromeIBS #GastroesophagealRefluxDisease #Medication #hurtfulcomments #funnycomments #Depression #Anxiety #Scoliosis #PTSD #youdontlooksick #tooyoungtobesick #lol #ChronicMigraines #Migraines

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    Happy 2 Year #Migraine to me!

    Happy 2 Year Migraine to me! It's not deadly, just debilitating & soul sucking!
    I have amazing Doctors taking care of me. In fact I would be at the #Mayo in Scottsdale if #COVID19 hadn't happened.
    So how do I get through the daily? Some days I was able to get up & exercise immediately. I found if I walked right away, the endorphins would give me a 4 hour window of "health". I was even looking into going back to work in some capacity.
    But most days I'm a vampire. I hide from the light, live in near silence & try not to move.
    I have lost count of how many Occipital Nerve & Sphenopalantine Ganglion Nerve Blocks I've had. At least #botox is included.
    I am thankful to not be in the group of #Migraineurs that have had an episode lasting 20 years. My jaw fell open when I was told that they survive on 900 mg of morphine/day. Most days I would kill for 10mg of #morphine or even 1 #tylenol3. I can't get either bc of the #OpioidCrisis . Maybe it's a blessing, but most days it's a curse.
    I've been able to do some shows while heavily medicated. You just don't see what a mess I am afterwards. That my Brother has to help me at the airport bc I can't check myself in.
    I wear sunglasses all the time, not to be cool, but bc that's how I deal.
    So what keeps me going? I have had so many health struggles, both physically & mentally. I want you to know that our will to survive is WAY stronger than our will to die. & I've wanted to die! I literally have the #Suicide headache!
    So, I've just taken my second dose of #Emgality . Fingers crossed it works! But even if it doesn't, I want you to know it's gonna be OK! I have a Husband who loves me, a roof over my head, no food insecurity, & clean water to drink. We also have 8 Nieces & Nephews growing up fast & we need to be a positive example for the kids.
    I know most of us grew up thinking it was shameful to talk publicly about personal problems. I am so happy to be in an era where feelings are to be expressed & not suppressed.
    I am thankful that there are people who will love you as is even if getting dressed & leaving the house isn't an option most days.
    So I leave you with this....Bad times don't last!💋 #ChronicIllness #Spoonie #youdontlooksick #InvisibleIllness

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    3 days of ME/CFS

    3 days now. This is my view of most places in my house when i have the energy to stay awake for a bit. I managed to be tired from doing nothing. My body feels like lead, aching like i was having the flu, chills and hot flashes. I know resting is self-care during a flare up, but is not fair 🤦 3 days that i have off from work, 3 days i meant to enjoy with my family, 3 days i barely remember. #EhlersDanlosSyndrome #MyalgicEncephalomyelitis #ChronicIllness #youdontlooksick #workfromhome #MedicalProfessionals #TooYoungForThisNonsense

    1 comment
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    Grieving An Old Life

    Hey all, I'm new to this app, but definitely not a newbie to chronic illness. I've been coping with so many different things that it's hard to triage them on a daily basis. My immediate issue is my osteoarthritis. The level of pain that I am in constantly, day and night. Many different pain meds tried and failed, and the pain remains. I've had a grand total of 17 surgeries on my joints so far, and I'm only 41. I have had 3 shoulder replacement surgeries on my R shoulder since 2006 and am under the knife again in 20 days (March 23rd) to have my left shoulder replaced. I've also had 3 ACL reconstructions and a tibial osteotomy on my right leg as well as many other soft tissue surgeries. Nearly every DIP joint in both hands are deteriorating as well. The list of things that I can no longer do is long. I feel like I am merely a shell of my former self and have much stress and anxiety about the life I once had and will never have again. Then there's also the guilt. The guilt that has me at my wits end because of the load that my wife now carries because of my short comings. Then I feel like "am I REALLY that bad off?" "Shouldn't I just suck this up and get on with life?" Then something happens and I am quickly reminded of my current status in life. Anyone else here ever feel this way? I am having a hard time coming to terms with a life that I no longer live in. Open to your thoughts. If you are still reading this, thank you for hanging in there with me. ❤ #InvisibleIllness #youdontlooksick #Osteoarthritis

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    But you don’t look sick... #ButYouDontLookSick #InvisibleIllness

    Being chronically ill and looking somewhat decent in the eyes of the healthy people has its advantages, specially for those of us who don’t appreciate pity. But I often find my self thinking about if they mean it as a compliment, I mean... What do you answer to that? Should I feel bad for not looking sick enough , even though I feel like I’ve died a hundred deaths, even though I know it takes a lot to even wake up every morning; Should I share my medical bills? Should I show them my drawers full of endless medications? Do people actually put thoughts in their words, do they understand the way we perceive that sentence as people suffering with invisible illnesses?

    I recall this quote from Wade Sutherland that says: “We may not look sick, but turn our bodies inside out and they would tell different stories.” And I wonder if they could actually see what’s going on inside , would they even be able to take it? I honestly think that looking good even when I am at my worst is a blessing, perhaps more for them then it is for me, because the less thing I want is for others to feel sorry for me or uncomfortable when they see me.

    Maybe it’s just my anxiety making too much of it but I would like to have somebody else’s thought on this...

    #ButYouDontLookSick #youdontlooksick #chronic #ChronicIllness #ChronicPain #InvisibleIllness #Spoonie #Anxiety #MentalHealth #imnotok #StayStrong

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    #youdontlooksick

    I hate when people judge me for not looking sick. for doing more than I can without knowing that I have no choice but to do so. Im sick of pretending and looking put together when no one knows how long it took me to get ready and how much of a struggle it is to get out of bed. #LymeDisease

    10 comments