The stigmatization of people living with a visible difference
I have a fairly unusual circumstance in that my symptoms oscillate dramatically from day to day. I can experience days as a “normal person” and then days when I look anything but.
The way in which my appearance varies so wildly can make maintaining emotional and psychological homeostasis very difficult. How am I supposed to remain balanced when my physical symptoms are all over the place?
There is an obvious benefit of this in that there are days when the stars align and I get to experience life without the crushing weight of insecurity on my shoulders. Sometimes this lines up miraculously, for example on my wedding day, other days not so much. This inconsistency creates a perpetual cycle of fear as to when I will spend the next day crippled with pain and embarrassment in how I look. It’s very difficult to settle into “my normal” when I don’t really know what that is for me.
An interesting perspective this has given me is an insight into just how deeply stigmatized we are as those living with a visible difference as I’ve experienced both sides of the coin many times. The stark contrast in the way I’m treated day to day when I look “normal” is pretty shocking. When my skin is flaring I often start each interaction with somebody new at a disadvantage/on the back foot. I have to make considerable effort to win them over and to get them to treat me as they would anyone else. During a particularly bad flair I remember a college teacher physically recoiling from me as I dared to get too close.
The opposite is true when my symptoms are clear. Not only does life feel infinitely easier as my cognition isn’t being taken up by pain, discomfort, insecurity, itch, lack of sleep but the way in which I’m treated is noticeably more friendly and welcoming.
Of course this is not every interaction I have, the world is full of wonderful people who are able to see past peoples appearances however unfortunately even one negative interaction can have a devastating effect, and I assure you it’s regularly more than one.
Unconscious bias is a complex concept as none of us want to be accused of something we’re not consciously doing. However as difficult as it is I do believe it’s something we should all reflect on as conscious or unconscious the damage that can be caused is horrendous.
This is why it takes me an extended period of time to trust people, let my guard down and be my authentic self, something shared by many in the visible difference community. This can easily make us more isolated, insular and plays into what can be the all encompassing negative experience of life with a visible difference.
Comments