When awareness becomes Stigma
The Risks and Benefits of Awareness
June has been Myasthenia Gravis Awareness Month. I have experienced the privilege of writing my own posts and memes. I have also been featured in one guest blog and interviewed by our local paper. I honestly feel that this the most awareness I have ever spread on the social media front.
The highlight from this is the increased support I have gained from my fellow Krugersdorpians, chronic illness warriors, friends and family. My blog, Facebook page and Twitter account have never before had so action!
Both come with their own varying levels of stigma. Stigma according to Irving Goffman is something in your character, physical self or association with a group that causes exclusion from normal society. It's discrimination, it's a lack of acceptance and often based on misinformed perceptions. This is why the challenge of awareness is set.
If I just disclose my diagnosis I can keep my private life to myself. However, I feel that it lacks the response of empathy. The trouble with only letting people know which diagnostic box you fall into is that people start to make their own assumptions regarding the unseen aspects of your illness. They compare you to what they have prior knowledge of or try gauge from your behaviour what this diagnosis means. For example, because I post a picture of me at dog agility on Sunday, I must be taking advantage of the situation when I’m walking with my cane on Monday. Or many others with MG don't work so you're pushing yourself too hard.
When I went to my homoeopath for the first time she asked me to tell her my personal experience. Not what one can find in a textbook, but how it truly affects my life. I really felt heard at this moment. My mostly invisible disability became visible and tangible to her. She heard how I still long to do things I'm passionate about, like dog agility. How I have to get my Aunt to drive me to an agility competition and back as well as help me wobble off the field and back to my chair after my two-minute field work. This is disclosing fully the trials and tribulations of daily life.
The downfall of this is that I make myself vulnerable to the opinions of others on how to run my life and what I should be doing. I have also realised that not everyone is comfortable know how sick I sometimes become. Like when my husband has to dry my hair after I wash it or how I have had a loose stomach for three days. It can cause people to react judgmentally or feel guilty for not being able to help more. Neither of which I intended to evoke.
I don't ever feel purely sticking to either is the answer. While I will disclose my diagnosis to a new employer it would take time and trust before I fully disclose to a new friend. I will always have a mix of the two in my life, therefore I will always have a combination of their stigma and reward.