sJIA

What is juvenile arthrits?

Juvenile arthrits is so much more than just pain.

It’s crying because you feel like a prisoner in your own body.

It’s locking yourself up inside your room because you feel like no one cares.

It’s constantly thinking about giving up on yourself.

It’s telling yourself you’re fine even while the tears are trailing down your cheeks.

It’s constantly answering the same question with the same lie.

It’s crying after being told how it isn’t the end of the world, and how much of a weakling you are.

It’s crying yourself to sleep because you just want to know why you had to have this, why you can’t be better, and why you can’t feel like a teenager.

But hey, at least it’s not cancer.

My honest viewpoint is that everyone has a disability. It’s just that someone classified disabilities and then stuck them on a list and then the idea that unless you are Diagnosed with something on that list-
you are “normal”. Here’s the thing, I work with “normal” people and I watch them struggle every day with something, sure it’s not the same thing as my chronic illness,
wait a minute, yes it is.

Whether Someone is terrible at relationships, or has an addiction, or has a bad home situation, it’s something they take with them every day, and struggle with every day, just like we do as spoonies. So in my opinion, everyone is disabled. Or the other way to look at it, everyone is “normal”

—  Mamas-still-doing-it-all
Spoonie Stigma

Everyone talks about the stigma of being mentally ill, or being part of the LGBT community. The news openly discusses racism and minority’s. But no one talks about the stigma against disabled people. They don’t talk about the subpar medical care, or making us wait longer then everyone else at the ED because the disease is chronic. They don’t talk about accusing us of being drug attics because we need pain pills even when we’re young. They don’t even talk about all the employers who won’t hire us because we are disabled. In fact they never talk about us at all. It’s as if we are as invisible
as the illnesses we have.

Kids get arthritis too!

There are over 300,000 kids in the United States living with some form of juvenile arthritis. These diseases can cause horrible deformities, mental health issues, and can even be fatal. This group of diseases is more prevalent than juvenile diabetes, muscular dystrophy, cystic fibrosis, and leukemia, yet it only receives a fraction of research funds ($2 million versus over $100 million for each of the previous diseases). There are 11 states without a pediatric rheumatologist and 7 with only one, meaning children are waiting to be diagnosed which decreases their chances of remission. This also means children may be seeing adult rheumatolgists, who are unfamiliar with child-specific issues and complications, or are spending a lot of money and time to travel far away to pediatric rheumys who are likely taxed due to the shortage. In the seven years I’ve been involved in advocacy with these diseases, I have seen children and adults with juvenile arthritis pass away either from infections or from complications of these diseases. I’ve lost close friends, and nearly lost others.

We need a cure.

Pain on a scale of...

The nurses always say rate your pain on a scale of 1-10, being the worst pain you have ever felt. So being that I have a chronic pain disease, I always say 7, unless for some reason it hurts so bad I am crying and screaming, that’s my 10. But then the doctors refuse to give me anything for the pain because I only rated my pain a 7. The problem
with this is my 7 would be someone else’s 1000.