See J. J is in a massive amount of pain everyday. A traumatic work accident nearly 22 years ago caused her to sustain a life-altering spinal injury. Today, J suffers with fibromyalgia, arthritis, and an array of very painful, chronic conditions. These conditions become more disabling with each passing day. Still, she presses on.
You fill your days up with a bunch of doctor appointments. Not leisurely. Days go fast, nights go slow. All you want is healing; free from the invisible.
When J was first diagnosed with her condition, she was told by doctors that things would only get worst. That she should try her best to live, because this condition would be what kills her.
J will be turning 59 in April.
For 22 years, she has felt her bones breaking, and attempting to repair themselves, before breaking again. Her nerves pinching, and burning. Her joints aching, muscles spasming. The disks in her spine deteriorating to none.
She has found herself lying on the ground, unable to move, talk, breathe properly. Her heartbeat, almost nonexistent.
You feel pain in areas, you see things happening to your body, and feel things happening to your body, but because of the system, they tell you they don't see anything. Hiding the truth from you and your family.
J often talks about her first time being sent to Drake Hospital. She and another woman were both in their late 30s, surrounded by patients in their 60s, 70s, 80s, 90s. . . Senior citizens on their death beds.
"What are we doing here? We don't belong here! These old people are about to die!" cried the woman.
There was a time when J walked with a cane. People thought she was older than she was because of that cane. A doctor eventually recommended she get rid of it, as to not train her body to walk hunched over. It was difficult, but she forced herself to walk straight without it.
That's when people had something to say.
J is unable to live without people questioning how she does it. Nurses asking how she even managed to get to the hospital. People saying, "I thought you were injured." They don't see the pain she is in.
Doctors are a huge problem. They tell J she is "doing fine" for someone with her condition. As if she should have just accepted things by now.
Invisible disability is confusing because they shield you from the truth; make you think you're getting better and that they can fix it, when its not. It makes you mentally ill; causes isolation from people, and it makes you feel like you don’t want to go on.
The truth is, after 22 years, J is just now coming to terms with things. The injury on one side of her body is being mimicked by the other. She can feel herself losing mobility, but is trying her hardest to fight it.
Everyday is a fight.
Cooking is a fight. Cleaning is a fight (but she believes cleanliness is next to Godliness). Going to the store is a fight.
Now, J is in physical therapy, and that too, is a fight. As mentioned before, the interactions she has had with doctors have made things more difficult.
They’ll learn how to not respond to stuff. They'll keep a straight face when you're talking about your disability,
J says she has always been an emotional person, but even when people let her down, God is with her.
You have to motivate yourself to stay strong, and see yourself healed just to make it another day.
Enjoyed J's story? How did reading this story make you feel? We hope her story will get you thinking more about the hardships people with invisible disabilities face. A conversation needs to be had about the role health professionals play. We will definitely be exploring this more, so stay tuned.
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