When living with an invisible illness what’s worse, the “Invisible” or the “Illness”?
I've spent most of my life looking quite normal. I’ve been on the skinny side since I was a child therefore not many people found it weird or concerning when I seemed to lose a little weight. When the weight loss became more evident, the people who actually did think there was something wrong somehow automatically assigned it to an eating disorder and therefore considered it a 'choice’, which is beyond me, as I can't imagine anybody choosing to have an eating disorder, or a disorder of any kind for that matter. I was actually suffering from another invisible condition called Emetophobia, which made me irrationally fearful of throwing up to the point that I'd rather starve myself than risking vomiting as in my mind that could potentially end my life.
In all the years I’ve been struggling with this invisible condition, I’ve learnt that the invisibility was possibly more damaging that the condition itself. I was sick, but most of the time I didn't look as if I was sick, and that turned out to be a major problem. The neglect, the prejudice and the not so silent judgment of people around me made life even more difficult than Emetophobia itself. By nature, I used to be pretty much an open book; I used to trust people blindly and I would always say things as they were. I never used to hold back on my opinions or who I truly was and I used to show the world the good, the bad and the ugly, no matter what. Despite all that, I have to admit that I had the tendency to be a people pleaser, not by nature but by nurture, so I had to fight this need to be liked with all my being as I knew that if I wanted to stay true to myself I had to be ready to be disliked sometimes. I learnt to be fine with it as I honestly believed that being true to yourself is far more important than having a bunch of superficial friendships. I could accept being judged for my personality, for not being able to keep my mouth shut or even for my moodiness, however I could not bear to be judged for my condition, for the effects it had on me, and the limitations it brought to my life.
As my condition got worse over time its grip on me tightened; it started shaping my life, ruling the way I would behave and dictating what I could or could not do. Living under constant fear and terror was hard enough but very soon I found myself being judged for the effects of an illness, which was obviously beyond my control. This was not only shocking, but also so deeply hurtful that I could barely believe it. I was being consumed by anxiety, fear and never-ending panic attacks and yet I learnt to keep a composed facade in front of most people. I showed my true self to only a few people whose judgment I didn’t fear. I couldn't understand how people could judge a person for something that was beyond their control. I guess it’s for the simple reason that some people just saw it as a choice. My illness, being invisible, in the eyes of many, was different from any other visible illness or condition, and therefore it didn’t deserve the same attention, care and respect. I have never seen a person with a broken arm being judged because they can’t move their arm, a cancer patient being judged for not having hair or an elderly person being judged for being too weak to walk at a normal pace. I’m not here to compare or belittle any illness or condition, whether visible or invisible, also because my mum is a cancer survivor and I am fully aware of the battle she had to fight to still be here today. I am just saying that all conditions, whether visible to one’s eye or not, deserve the same kind of respect and support. I have seen so many patients suffering from well knows and visible illnesses being supported, encouraged, praised and even glorified by total strangers for being the brave fighters they are, and rightly so, as they deserve all the support they can get. However, I have never seen people with mental illnesses getting such support, such encouragement and praise as our conditions are still very often seen as nothing serious or as a ‘choice’. And yet, it is not so. As people don't' choose to break an arm, people don't choose to have a mental condition. It’s as simple as that.
All people deserve the same respect, no matter what their skin colour, religion, love orientation or health condition is. We can never judge a person if we haven’t walked in their shoes, seen the path they went through to get to where they are and felt the pain they might have had to endure. So if you haven’t walked in my shoes, keep your judgment for yourself, as you don’t know how hard it is to live in a world that dismisses illnesses like mine faster than a common cold and makes our lives even more difficult than they already are. Living with an illness of any sort is hard enough, but being judged for it, being belittled and being seen as a weak person even though you know it take endless courage just to get up in the morning and face another day on that battlefield, is simply not human. Just because my wounds and my scars are not visible to one’s eye does not mean they do not exist. Most of us believe in a God, some very strongly, and yet none of us has ever seen It. That proves that people can believe in things they’ve never seen, so why is it so hard to believe in invisible illnesses and give them the respect they deserve? If people would only understand that their judgment and lack of compassion is sometimes what makes our difficult lives nearly unbearable, then I’m pretty sure they’d think twice before passing a negative comment or being inconsiderate towards a person who’s fighting the hardest battle, the one no one can see and therefore no one acknowledges. Once I read that the lack of acknowledgement of one’s pain is the highest form of violence towards a person.
People's lack of compassion has made me question my own worth; their negative comments have rocked my already low self-esteem and their harsh judgments have made me want to become invisible. So over time, I, as my condition, have become invisible in the desperate attempt to avoid their scrutinising eye, as being misunderstood and so harshly judged for a condition that was already tearing me apart was more than I could bear. I wanted to fit in, I wanted to be like them, I wanted to be normal, so then, maybe, I could be respected as a human being and not some kind of weak individual who’s incapable of controlling their own mind. In this process I lost myself, my voice, my personality, my blunt nature and most of my will to keep fighting. My spirit was broken. They made me feel weaker than I was; less courageous than I proved to be each day showing up for my daily battle; less worthy of respect, even though I know how hard it has been surviving all these years with barely any support or understanding. This is how I came to question what was actually worse, the effect of the 'Invisible' or the effects of the 'Illness' itself? I concluded that, in my case, the invisibility had far more devastating effects on my life and actually worsened my condition significantly.
Today I know how wrong they were to judge me, but I'm also aware how wrong I was to let them get to me when I was the only one who knew the strength it took to still be here today despite all the obstacles I had to face since a very tender age. So today I’m putting a stop to all this torture, not the one that Emetophobia makes me go through, as that’s unfortunately not a choice of mine, but the torture the society has made me go through just because I was not normal enough to be considered ‘normal’ or visibly sick enough to be considered ‘sick’. I’ve lost myself in trying to earn the approval of other people, but now I’ve come to the point where I’m ready to lose their approval in order to find myself again!