One of the hardest things a person can go through, is having to fight to be believed by the medical community for whatever it is you suffer. It’s absolutely shocking how many stories I’ve read where Doctors or nurses yell at their patients, telling them to get up when they can’t walk, or flat out disbelieve the plea being made. It’s even worse when you have family or friends who do the same. I can not, for the life of me, figure out why anyone would ever fake an illness. Who WANTS to be sick? Who WANTS to give up their lives and lay there staring at the walls and be completely unproductive? I sure an hell don’t. In fact, it’s one of my biggest frustrations. I WANT to….. do so many things…. but my body betrays me.
The family and medical communities betrayal is absolutely the worst thing to experience during a time when your plate is full enough with all the disabilities your body is going through. There is absolutely NO justification for it. None at all. Zilch. It is NOT ok. Having invisible illnesses suck on the highest level since we look so normal but we’re far from it. Should I cut my arms in neat little slices to give a visible sign as to the pain I suffer? Learning to let go of it is easier said than done. And with doctors working FOR US, they really aught to remember that and start taking us seriously. I’m glad I have some doctors that do, but they still think along the lines of ‘we’re all horses’ even though a Zebra stands before them.
I think that’s why some of us jump with glee when we finally have physical proof, such as genetic testing, or some other kind of sign that SHOWS we truly are ill. It also makes some of us want to go back and hit them all upside the head with the paperwork. I know I want to, to smack them in the face with what they failed to consider, or believe, or treat. With many more of us having those rare or uncommon illnesses and diseases, we need to retrain our medical community to start looking into them. We also need an overhaul of the medical community from the top down. They’re failing their patients.
We should also have more attention brought to the public about how invisible illnesses work and affect us. Awareness of how normal we can look but how badly we can suffer. Maybe then, family will start opening their eyes to the truth and stop looking down their noses and gossiping about how ‘well we look’ and how we must be faking or looking for some kind of attention. It’s simply insulting.
And while I’m at it, please don’t cry to me about your fatigue or your painful hangnail. Most don’t know what true fatigue or chronic pain feels like. And yes, chronic pain patients handle pain differently. Our bodies become use to high levels of pain and learn to function as best as we can. So if we tell you our pain is an 8 while using our phones to read or get on Facebook, yup, we can do that and still be telling the truth. We handle our pain with grace as we suffer it daily and learn our own accommodations to survive. Some days we might simply be done with it all and just lay there, resting our bodies and recuperating. No, that doesn’t mean we’re lazy. Far from it. Our batteries are drained and we’re recharging them.