I just read a little bit on the story of a 14 year old boy who was born with a disabling skin condition: Epidermolysis Bullosa.
There are so many medical conditions worldwide that are absolutely heartbreaking. How can we bring awareness to all of these awful illnesses that plague the lives of so many?
Every illness deserves media coverage. Every limitation on the human condition deserves to be known.
I, personally, thought that it was amazing that the Ice Bucket challenge managed to bring awareness to ALS sufferers worldwide. This is a disease that was relatively unknown by many populations before that movement sparked so much attention through social media.
When I was first diagnosed with Ulcerative Colitis, I had never heard of it and no one that I knew at the time had heard of it either. Now it is commonly known - the word finally got out there.
When I was diagnosed with Ankylosing Spondylitis, I had never heard of that particular type of arthritis either.
One particular illness that always makes me tear up when I sit down and take the time to truly think about it is something called Locked-In Syndrome. In short, the mind and thought processes are FULLY functional, but you are physically unable to move or communicate. There have even been cases where a person is mistaken for being brain-dead. Could you imagine? Unable to write or type or speak or even move your eyes, but able to think just as clearly as any other person...
The other range of illnesses that don't always get the respect that they deserve is mental illness. It's another one of those invisible diseases, and incredibly difficult to truly understand, but what's worse is that many don't understand or believe how mental illness can cause major physical pain as well!
There is no concretely understood prognosis, there is no scientific way to understand exactly how ANYONE thinks, and therefore makes it impossible to truly understand someone with mental illness.
Take anxiety for example.
We all have fears and phobias. For many people, it's heights, or spiders, or being stuck in a small enclosed space, etc... And we have all had to face our fears at one point or another. (My big one is bees. I hear ANY flying animal buzz and my fists clench uncontrollably and I freeze and start to shake all over. My one encounter with a killer bee will forever be one of the most panic-stricken moments I have had.)
We have all had it happen. Maybe you're claustrophobic and you became stuck in an elevator. Maybe you're afraid of heights but you went on the Ferris wheel anyways to impress that cute girl, and you got stuck at the very top because someone got sick and they needed to clean the ride, or maybe there was an issue loading the next people on the ride. Whatever the case may be - everyone has felt that panicked feeling, where you are squeezing your eyes shut, frozen in place, accidentally holding your breath because you truly feel like if you move ONE muscle, you may die.
Normally, that panicked feeling lasts a short time - maybe five minutes, maybe more. Could you imagine having that terrified, intensely panicked feeling, on a regular basis? Every day? Or even having that feeling for no reason at all! One minute you are watching a funny tv show and the next minute you are absolutely paralyzed with fear, and you think that if you move you will die.... How debilitating that must be! And the judgement that goes along with mental illness is astounding!
Let's face it, we can all be pretty judgmental. I'm no saint. I have judged someone prematurely without any real reason. Mental illness has such a bad rap. Someone's paralyzing phobia may seem juvenile or even ridiculous to some, but the fear and the anxiety is real and frightening.
In fact, there are lots of illnesses and injuries that have a bad reputation. Here are a couple of examples:
Lung Cancer.
Some people develop it from smoking, some people develop it from second-hand smoke, and some people develop it just because they picked up the Joker in the medical deck of cards.
All three types of people suffer similarly. Yet we view them differently. We judge. SHOULD we view them differently?
A debilitating injury from a car crash.
One may have been drunk, one may have been high, one may have accidentally run a stop light or hit someone who was in his/her blind spot. Same idea: if each of those people had the exact same injury - they all suffer the same, but we treat them differently. Should we?
We all make mistakes. Could you imagine making one mistake and then having to fight an intensely painful disease and then never being able to talk about it?... Because society berates you for making that mistake? Because society treats you as though, because it was your fault, that you have no right to be upset or complain or grieve?
Trust me - I am guilty of judging. I am pretty darn ill, so when I see someone being careless with their health and then start asking for money or media coverage or special treatment, it absolutely irks me. I did nothing to myself that could put any blame on me for being this ill. But that also doesn't mean that anyone else deserves it either. No person deserves to be in constant, physical, debilitating, and uncontrollable pain.
Every single person is suffering in his/her own way.
There are millions of disorders and illnesses and diseases that are completely disabling. They can change someone's life - they can ruin someone's life. They can also ruin the lives of every person around them; the families, the friends, the coworkers and bosses and significant others, etc...
It is really a shame that there are so many disorders that go unnoticed, that have no public knowledge or awareness...
How lonely that must be.
Everyone has days where they feel alone - that they are misunderstood or not at all understood - and illnesses that are THAT invisible just make the world seem even more lonely.
How do we come together as a society to bring awareness to the infinite amount of illnesses that are widely unknown?
How do we get the conversation started? How do we stop comparing our own plights with the plights of others? How do we sit back and decide that no matter what a person did to him-/herself, that NO ONE deserves to be constantly struggling just to stay alive? It is absolute torture. No one deserves to be tortured. Especially by our own bodies.
Take a moment to think about how many hundreds of thousands of people who are lying in hospital beds right this very minute. People who are writhing in pain. People who have no idea who they are or what is going on in the world around them.
Tortured by their own bodies.
And judged for it.