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!

The downside has been the negative comments. I understand that by writing about my life and MG, I open myself up to the potentiality of these comments, but they still hurt. Before I blogged I was open to speaking about my diagnosis. Since then I have realised that there is a difference between diagnostic disclosing and full disclosure. Saying I have MG and these are my symptoms  to letting people into your heart. Letting them experience your daily struggles and victories.

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.







Comments

  1. I am amazed that anyone woudl ever take a pot shot with a chronic disease, but I see it often in the diabetes community and sometimes in the RA community. I am so sorry you had to endure such abuse. My philosophy is if someone does not like what i write, then they should not read it.

    Take care,, it is a tough road sometimes

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  2. That's a normal reaction. Drives me nuts when ppl tell me, I look healthy. Or a sweet person will see my face, call 911, and the paramedics try to put my drooling self on a spine board. MG is horrible enough to worry about the negative ppl around us. I fell out at my Nannir's funeral, I was told my stupid cousin, Jamie, kicked me and claimed I was faking because nobody's muscle just go out. I can hear everything going on. Hang in there!!

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  3. So far, I've mostly received positive comments about having EDS, but I'm sure I will have to deal with negative ones at some point. BTW, love your blog name ;)

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    1. Thanks for the kind words! Spoonies unite!

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  4. Ugh, I'm sorry that people are idiots. I've been extraordinarily lucky to have had to just 1 troll in 8 years of blogging and only a few people ever leaving comments that are remotely judgmental. In those cases it's usually just that they're not quite understanding. Even so, something that small can be tough. To have gotten anything like what you're describing...

    Just keep disclosing exactly as much as you are okay sharing, even the icky, because the right people won't get weirded out. The wrong ones will either skip the posts that are obviously out of their comfort zones or will fall off. I know we all want readers, but we want the *right* kind. The ones who will listen with a sympathetic ear without feeling as though they should be able to do something. My readers give me a lot of virtual hugs, but beyond that they know that this is just what my husband (fibromyalgia and severe eczema to the point that it's disabling) and I (chronic fatigue and bipolar II) live with. They're along for the journey, which includes stuff that's something seriously icky. Though I do leave out one or two things sometimes that are too personal, like when I skipped blogging about one of my husband's MRSA boils (he had one after another for about three years) that was on an, ahem, very personal place.

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  5. Thank you for your honest and wise words!

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