sJIA

Emotions that go with being a Spoonie

Fear: this is a big one. It is easy to be afraid when you are sick, and as spoonies we are always sick, but then the other stuff starts to add up quick, turning into a deep downward spiral of doom

Loneliness: Spoonies are often left out of invitations or can’t go even if they are invited. Friends ignore calls, until they have time to deal with their “sick” friend. Quite frankly, able bodied people don’t have time for spoonies so we are lonely. Spoonies get left out of a lot.

Sad: this one is easy. Feelings of sadness come for all kinds of reasons as a spoonie. It’s sad being a spoonie and watching the world go by as if it were a television show and we are just watching it.

Anger: this is a big one. It’s easy to be angry for being a spoonie. Wondering why. WHY ME???

Self-Doubt: doubting yourself due to your disability

Feeling Inferior: always trying to overcompensate, prove that you are just as normal as everyone else.

Self-Pity: it’s easy to feel sorry for yourself as a spoonie, because you feel like everyone else does.

Mad at the world: this one is easy

Feel free to add any others that come To mind or things that you have felt.

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.

Omg a movie was made and the lead has my disease?!? Has anyone ever heard of the “Big Sick”?

I hope this isn’t another abelist film like “Me Before You” or “Love and Other Drugs”. Both films made me so depressed about myself and how others would see me as baggage. I’m looking up this film and I hope it’s not going to make a mockery of Still’s disease bc I don’t think my self esteem can take it.

My disease is so rare and no one understands what I go through and I hope the film achieved awareness about my disability without making me feel that my life is worthless.

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.

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.

I’ve done roughly 600 of these daily shots now. I rarely even think about what I’m doing unless I hit a vein. It’s just a part of my daily routine now, just like taking my other night time meds. I’m so incredibly lucky to have a med work this long - before Kineret/Anakinra, I had failed six medications in five years (mostly because they weren’t targeting my specific disease type). I’m forever grateful to researchers, doctors, patients who came before me, and all the sweet animals that have been forced into medical testing without their consent. Honestly, the latter is part of why we have guinea pigs - and why I spoil them every minute of every single day. #anakinra #arthritisawarenessmonth #rheum #SJIA #systemicjuvenilearthritis #juvenilearthritis #juvenileidiopathicarthritis #jia #stillsdisease #fibro #spoonie #arthritis #arthritissucks #effarthritis #chroniclife #chronicpain #chronicillness #chronicsex #notstandingstillsdisease