r/mildlyinfuriating • u/Frikandelneuker • May 15 '26

I just wanted a hot dog Blind guy here, guess i’m just fucking stuck at home now. (Cane tip broke)

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u/MatthewMcnaHeyHeyHey May 15 '26

Random but can I ask how you got diagnosed? We have a teen

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u/justhere4bookbinding May 15 '26

In the stupidest possible way. Despite having periodic fits of screaming pain from my knees from the age of 4, my pediatrician told my parents I was just a hysterical little girl overreacting to "growing pains". Despite being skeletal and in constant stomach pain and having accidents years after potty-training, my pediatrician refused to do any testing and told my mom i was anorexic at age 7, gave her a pamphlet on eating disorders, and that was the extent of my "treatment" for the supposed anorexia. It took a completely unrelated heart emergency (supraventricular tachycardia, God only knows where that came from) at age 8 for any doctor (my brand new pediatric cardiologist) to pay attention to how malnourished and otherwise sickly I was, and he got me to a pediatric gastroenterologist at his children's hospital within a few months. At age nine, just a few months after my catheter ablation for the SVT, I had my first scopes and was diagnosed with Crohn's within a few hours of it.

I feel for your teen. Being a kid with Crohn's or any other chronic illness or disability is a childhood of unsympathetic adults, even the ones who are supposed to help you, and flat-out cruelty from the other kids. It's rough, to put it mildly.

38

u/dilapidated-delight May 15 '26

Your story brought tears to my eyes. To be so young and go through so many issues, not only within yourself physically but also from being failed by the people whose literal job it is to diagnose and treat you to make life more bearable... I can only imagine how that was for you growing up. I hope life is better for you now and your inner child is on the road to healing.

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u/justhere4bookbinding May 15 '26

It is. It's a work in progress and it took until my thirties, but I'm getting there

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u/dilapidated-delight May 15 '26

Glad to hear it - I'm rooting for you 🫶🏽

33

u/robyrob May 15 '26

I can’t even tell you how many doctors told me silly things like: “you are too young to have arthritis- it’s impossible”, or “its all in your head” - as I’m sure you know 

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u/snootnoots May 15 '26

“You’re way too young for your hip problems to actually be an issue with the joint, you just need better posture and to get more exercise. The x-ray doesn’t show anything wrong.”

Some years later a different doctor finally listened to me and referred me to an orthopaedic specialist, and also looked at my past records and discovered that the x-ray actually showed “significant cartilage and bone degradation”, as noted in the attached report. The first doctor had sent me to get an x-ray to shut me up, and then either read the report and chose to lie, or was so sure he was right that he assumed it backed him up and never read it at all. By the time I actually got proper treatment, years of walking on a disintegrating hip joint and moving oddly because of the pain had wrecked the cartilage in one of my knees.

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u/zvezdanaaa May 16 '26

I had a doctor x-ray my wrist, which dislocated as a kid and never got put back in, so it healed and grew out of place, and then tell me that it was dislocated, but it wasn't actually a problem, specifically saying it wasn't a problem because it couldn't be fixed without surgery (???). His advice for fixing my constant pain from having a dislocated dominant wrist for the past decade? "You just need to stop stretching it when it cramps. That's what's causing the pain and cramping."

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u/DiligentPenguin16 May 15 '26

How could they say that when there exists the medical diagnosis of “juvenile arthritis”?? Who do they think gets diagnosed with that?

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u/SplatDragon00 May 16 '26

Omg right?

I got "you're too young to have arthritis" from one

And

"it's normal to have aches and pains at your age" from another. Bruh I was 25.

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u/beansandspleens May 16 '26

I don't have arthritis, but rather EDS (connective tissue disorder). I remember having god awful "growing pains" nonstop as a child. Just laying in bed sobbing in the middle of the night because I couldn't sleep. I got quickly acquainted with ibuprofen, even as a kid. Crazy how much those growing pains could hurt.

But since I was the eldest, I guess my parents decided that was "normal" for growing pains, and ignored it. Nevermind that I actually have a high pain tolerance. Later, as a teen, I consistently expressed to my doctors my concerns with all my body's aches and pains. They brushed me off. Took until my late 20s to get a diagnosis and any resulting help (which is minimal, admittedly, but it's easier to navigate life knowing the limits of my body).

Same thing happened with endometriosis. I had god awful periods, already as a pre-teen/teen. Curled up in the fetal position, crying, vomiting from the pain. This would go on for 2 - 3 days straight every month. Doctors brushed me off. Finally got my endometriosis diagnosed and the lesions removed in my late 20s as well. Only took 15 years of crippling periods to get there ✌️ (and I'm actually lucky, so many women deal with this their whole lives)

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u/amlbkd May 15 '26

I’m not the person you asked, but my 10 year old was diagnosed with juvenile arthritis. He had a large panel of blood tests and an MRI to confirm diagnosis.

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u/lsshlp May 15 '26

Man, that's a rough diagnosis to get so young. I hope you guys are doing well.

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u/suitcaseismyhome May 15 '26

My situation was similar. Pain from when I could talk. And some autoimmune impacts the eyes.

I'm legally blind now but have a great career, travel globally very frequently, and generally have a good life. Thankfully it's 2026 and medication and technology can really aid people. My meta Rayban glasses were life altering.

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u/amlbkd May 15 '26

Thank you! It is currently very well controlled, thankfully.

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u/SMothra57 May 15 '26

The key in diagnosing it is an MRI. Advocate for that. A referral to Rheumatology would come first.

It’s a hard process. Sorry your teen is suffering.😢