Support and Positivity

This topic, a non-athletic one, is going to be a little controversial and could cause some problems, but this is my blog and I really need to get this off of my chest.

Very recently, a new friend with EDS joined a support group I'm a part of. This friend was recently on TV. She was sweet enough to bring awareness regarding EDS to a national crowd. This friend is Enedina Stanger. Beautiful wife and mother. She's honestly one of the sweetest and most grounded people I have had the pleasure of meeting.

Instead of thanking her, people critiqued her words, bullied her, and even asked if she even had EDS. This broke my heart. Even worse, this continued to happen in support groups. She was gracious and continued to try to explain things to people, even writing a blog post about this. But still, people are cruel.

I've seen the same thing happen to my friend Linda Li, who even started the group. Constantly people ask if her symptoms are as bad as she pruports. People will constantly undermine her, call her names, and even say she is drug seeking or lying for attention.

I just don't understand. At all.

Now I will admit, I am new to this disorder, having only been diagnosed less than 3 months go. But as an academic, as someone who in naturally inquisitive, I have learned everything I can about this disorder. I want need to know everything I can about this disorder. I am the type that has to know what is to come, especially when this disorder is so very terminal for some people--which it is.

As a result I joined groups, lots of groups. I added anyone and everyone. I asked questions. I sought answers. I did anything I could to get some answers.

And now I'm more confused than ever. 

Not by the disorder, but by the people. 

I don't get it. I actually had to step away from the group, at least for a few days. And let me tell you, I love this group. I spent hours days reading every single post that people made. I spent countless hours making responses, researching responses, and just being there for my fellow EDSers. Backing away from this group has broken my heart, even to the point of having to write this. I feel lost and I don't know what the answers are.

I have always been the positive type. I will try to do anything and everything for anyone who is hurting or needs support. I would, and have, risked my life for complete strangers who are hurting or being hurt. I put my heart and soul into everything I do and all I ask is that people understand that there is more than just them/their opinion out there. Apparently that makes me a horrible human being. Apparently that opens me up to some horrible commentary about my education level, my lifestyle, and my worth as a person. Additionally, just continuing to do what I have always done apparently undermines other people and is not welcomed. 

I understand a lot of the members in this group are in a lot of pain, are used to not being believed, and can often be very irritable and angry because of it. That does not excuse the behaviors I have witness and the way I've been treated. I have seriously never had my core shaken so greatly. I don't understand why people are so cruel and how they could think it is okay. A lot of them hide behind the guise of fairness--it is your opinion and should be allowed. No matter what, bullying should not ever be allowed. How people think this is acceptable is just beyond me. 

Is every group like this? Is this the not talked about side of having an illness and trying to be a part of a support group? 

Is this the reality I'm supposed to accept...because in no way am I ever going to accept this as part of my disorder or part of life. In no way am I going to ever let these toxic people be a part of my life again. So if you think that you need to judge and put other people down in order to feel better about having this (or any) illness, you can kindly walk out of my life. That would be best for both of us. 

Support groups are supposed to support. It's that simple. All of this judgment and assumption about people does not help move forward and certainly does not ease any pain or suffering. That simple. Love. The answer is always going to be love.