Invisible Illnesses

#SickButInvisible

Since Mary has been sick, a lot of changes have taken place with her and with our family. But mostly, the changes recently have been the people around her, around us. Unfortunately, people want to be able to see your illness or your handicap, and sometimes, even if they can, it's still not enough for them because it isn't affecting them.

Marian is a 10 year old little girl with the same wants and needs of other ten years old little girls. The difference is that Mary has had a major road block put in front of her and she can't always reach out for her needs and wants. She has to have help, whether it be in the form of a wheelchair, a handicap parking permit so she doesn't have to walk long distances, special shoes, a special bracelet, a laptop to do her schoolwork, or needing someone to help her up into the car or down out of the car, whether it be someone getting her tray for her at lunch or taking it up for her when she's done, or it could be as simple as letting her sit in the front seat of the car because it's too difficult for her to get in and out of the backseat now.

People look at her funny. People who just don't know her or her situation, they judge by the fact that she looks like a normal, healthy little girl. She laughs like she's ok, she is strong in her speech, she can walk so sometimes she just stands up out of her wheelchair to walk short distances while we push it behind her waiting for her to need it. That gets lots of funny looks. I guess to someone who doesn't know, it looks like she may just be lazy or faking it to get out of doing things, but she really is sick. She really is hurt. She is just strong and hard-headed and even stubborn and she will not just give in and give up. That's a good thing. She wants to walk when she can and she wants to play when she can. She doesn't want to be confined to her chair all of the time, so she pushes herself as far as she can until she has to sit down. I encourage her to do this. I want her to be a fighter. No matter the looks she gets or the not so hushed whispers she hears behind her back. They don't know her pain, they don't know her struggles and they certainly don't know her heart or her strength.

JIA is not the same as your Grandmother's Arthritis either, (I know people think "She has arthritis, so what? I have arthritis too. I can still manage.") it's an autoimmune disease, which means her whole body is basically attacking itself. It's not just a ten year old suffering constant, crippling pain that she shouldn't even know at this age, she also deals with high fevers, body chills, not being able to walk, horrible headaches that can last for days, poor eyesight, and really awful fatigue. That's just a few things that she faces. It seems like we discover a new "perk" of this illness all the time, like there is just no end to it all. There's always something new in store for her.

Mary spends many nights crying and tossing and turning in her sleep. Her hip hurts her badly as she sleeps because she is naturally a side sleeper. Her wrist never has relief, even with medicine, it still hurts her very badly.

Things that we take for granted such as writing a short note, using a utensil to eat with, lifting a jug to pour her own tea or milk, even wiping (shhh) is extremely difficult and painful, and sometimes she just can't do it alone. She can be walking from the car to the front door, and she will be fine and then we turn around and she's on the ground. She fell, boom! just like that. Her hip gave out and she couldn't stop herself because she can't catch herself with her wrist like it is, she just has to fall. Her shoes have been squeezing her ankle and causing her pain. Even if she's in the chair all day, the shoes hurt her ankle and by the time she gets home, she's swollen and almost in tears. She just wants to take off the shoes.

The people at her school whisper when she rolls by and they point and they sometimes laugh or make comments out loud. Mary just ignores them but she still hears them, I can't imagine it doesn't bother her. Even some of the staff have been rude to her.
But who would take the word of a small child? No one around here will.

Mary has been missing a lot of school here lately. Some due to being sick, but mostly due to her being in pain all night and not getting enough rest. And then waking up still in pain. Thankfully, she has a wonderful teacher who helps keep her caught up and Marian is such a great student and so hungry to learn that she pushes herself to keep up and do her very best at all times. So Thank God above, she is not behind as of right now.

It just breaks my heart to see everything that she goes through and to know that people still think she's faking it, just using it as an excuse to get special treatment or to get out of P.E. or to get attention. I am positive that she would give up all this pain to be able to go back to P.E and I'm sure she'd give up the attention and special treatment, just to not have the pain anymore.

I wish people would think before they made judgements against another. Especially if they don't know the situation as well as they think they might.


**I took Mary and her sister, Kathryn to the lake a few evenings ago and they had a blast. She was slow walking, and she made sure we took her chair for breaks, but she did great and she got to touch the sand and the water, which made her heart happy. She found some seashells and kept them to start a collection. They both had fun and it was a much needed escape from reality for a few minutes. :)

I am hoping we can take her to the beach soon. She loves the ocean. I think she needs the getaway
from everyday life as it is right now.