It's kind of weird, because my illness and disability -when it is a disability- is invisible

But when I go to these appointments it's like FULL DISPLAY HELLO YES IT IS I, AUTO-IMMUNE DISEASE LOVELY TO SEE YOU.

My medical records are ??? long lost in the chaos from my mother's passing, to moving around in more recent years. So the doctors only have my word to go off of

They never question, they take me at my word but it's always with a hint of ....... curiosity

Like old fashioned curiosity

Like a circus kind of curiosity

Also, I swear this happens every time

I'm sitting in the waiting room, my dad tagged along

He is, indeed, a senior citizen

And he got up to use the restroom and another kind elderly lady smiles at me and says "it's so sweet of you. Are you taking him to see the doctor?"

I smiled and as politely as I could tried to say I was the patient

And she immediately was like "oh my god, I can't believe it, you're so young"

MA'AM.....................................

If I got a nickel, no. A PENNY for every time I heard that I would be a literal millionaire

So the actual appointment was also odd lol

The nurse who was with me initially to do vitals and all that was trying real hard to relate

But her go-to for relating to my condition was her grandmother lmao

WHICH IS FAIR and you know, it wasn't awkward

And she clearly looks after her grandmother so that's honestly fine but lol

She was definitely around my age and her only bridge for understanding were things her grandmother had said

TO BE FAIR

When asked about pain level I said 2-3. Because it was going to rain and I could feel it

And that's like. An actual thing. But obviously, elderly also have a tendency to say that so I walked into that one

And I just wanna say, no one was directly rude

It's just a little tiresome

And I just wanna whine

So the doctor was kind, we had to go over medical history verbally since my records are ???

But this is a doctor that typically doesn't see people younger than 60 on a regular basis

So she would ask a factual question "when were you diagnosed"

I'd respond

And she would break into a "that must've been really hard on you"

It's the weird pity that gets to me

And it's strange coming from someone where this is all they work with and they'd still say that. BUT it's complicated

I think when you (this is a generalization) when you are young and you get this kind of "life-altering" diagnosis then you can more easily bounce back. Because you don't have a normal yet and you'll just get embedded in this normal

Like, for me. Achey joints and swollen knees and fingers are a norm and I have to be mindful of them and fevers and colds and anything that can tilt my immune system off-balance

And that's just. Life

i feel like this is something people who don't live with or in immediate proximity to a chronic illness just don't seem to get, including doctors

But I also can imagine that for those who have a normal and a routine and it's good and it's manageable and then they get a diagnosis like an auto-immune disease where they now feel like life has eggshells under it that it can be hard to adjust and you might be remorseful your normal isn't what it was

YEAH....

you have to find a way to live around it or you don't have any life at all

Not even around, you gotta live with it

I mean. This is my normal. It has been my normal since I was 6, I don't know another normal

my gf faces a lot of issues where people don't believe she's in pain because she remains pretty cheerful despite her baseline pain being a 4

Yeah, I completely get that

yeah you're right, you have to live with it

When it's your norm, you don't get to mope. This is it. Forever. lol

yeah

So maybe.. this doctor is more used to giving bad news

Like I'm sorry ma'am but you have a chronic illness, here's how your life will change

And the reaction is likely ... the patient being upset

So I'm guessing that's the case here?

Idk, the best RA doctor I had was the one I had as a kid. He didn't do anything except treat me like a kid. He'd have these annual picnics with all the other patients

AND AS A KID it was the coolest thing because I got to meet kids that were like me BUT

WE DIDN'T CARE

hopefully that's what it is

It wasn't a talking point

We just were like Hi. Let's play and if one of us gets hurt we stop and run to the doctor lmao

Instead of having to explain "I can't run, I have arthritis" or "I can't do monkey bars, falling would be bad" etc

No need to explain, they just. Get it.

Because we're all in the same boat

BUT ANYWAY

The doctor was kind but out of touch with how to handle a patient my age that's had it for.... nearly 30 years

She ordered blood work (a normal thing) and x-rays (another normal thing)

She worried I would hate needles which surprised me

Because with RA you have to get blood work (while medicated) once a month, and some medications like the biologics are needles once a week

So some with RA that have had it since they were little have a phobia of needles as a result

This ... actually surprised me because I had the opposite reaction of I don't have a phobia, but I need to look

If you are poking me then I need to see it. Idk why, that's just my brain and has been since this was my norm

The only thing I was like eeeeeee...

Were the x-rays. It's another normal thing. My fingers are fucked, basically. And doctors are just fascinated with them

But x-rays are uncomfortable because my pinky is permanently bent and it's hard to x-ray something that won't straighten so they usually have to tape my fingers to a surface and it's uncomfy and a bit embarrassing

Luckily, the imaging people were really chill and did not tape my fingers

They did comment about it and I laughed and said "well, that's why I'm here I think"

FAIR right

But I initially was a bit when the doctor asked if I'd be good to x-ray

Obviously I agreed to it, but I did voice that the tape was unfun

Anyway, next visit is next year if everything is chill and no flare-ups come around

I do get flare-ups, I'm bracing for one this weekend

But I can usually combat it with naproxen sodium and ice

Renn faire this weekend and it's going to be cold and a lot of walking so my joints are going to be angy

Anyways, if you meet a young person and they say they have arthritis... believe them! Thank you for coming to my TED Talk

i have a relatively tiny mouth so I understand being pouty over x-rays

those stupid thick plastic things HURT

and jab into my mouth in awful ways

Lol ya, depending on the kind of x-ray it can be really painful

It's not fun