That was said in a conversation between my Mum and a shop keeper yesterday, It applied to a normal scenario in life and yet I found myself comparing it to the large online Trichotillomania community.
On some level, I believe that the Trichotillomania community is my family, though unrelated. We’re all brought together either as sufferers or as relatives/friends of those suffering. For some of us, the only thing we have in common, is our disorder and we are starkly different in every other way imaginable!
I have support across the web and for that I am grateful, but there is that one place online that I feel the surge in activity. There are 3000 of us living and typing in the same space in that facebook group! It’s like a household filled with too many siblings, all growing up at different times. Some in better places, or with more understanding of their condition and you have those currently living at the other extremes. That environment is a horrible concoction waiting to explode in bitterness and anger (extremely regularly).
No family or group of people are perfect. Just because we all have something in common, doesn’t mean we’re all wonderful people. There are misunderstandings and arguments, but there are also cliques, bullies and trouble makers. (Furthermore, especially in this community, there are people with a variety of disorders and life conditions that can make things harder than they would be if we were together in the flesh rather than typing!)
Sometimes, I do not enjoy being part of this community and it makes me feel so sad.
I feel like you’ve put on a sea-saw and control the movement. At times, I feel loved and welcome up high - especially when awareness is going strong or I’m restricting my honesty/postings.
When things are hard (like last week with the hair cut or when people decide to pick arguments over how I’m a bad role model when I’m not overly optimistic with Trich), I feel like I’m pulled to the dirt on the ground.
I feel my own popularity trends and I don’t like feeling like I’m only wanted when I’m useful. I’m only welcomed when it suits others agenda.
I feel like I’m suffocating on some level in there and elsewhere and I know I’m not alone. I want to be my own person and be who I want to be, expressing my views and theories, but I’m struggling with all this backlash and Trichsters pulling me down.
Spreading awareness is hard stuff, I’m trying my best to help you all and help the condition itself - but sometimes all that feels null and void.
I can’t sugar coat this condition to please the world, I can’t spend my life living in hope of a better tomorrow and preaching hope and pull free happiness - especially when it’s something I do not believe in. Hope for me is pointless. I’ve found acceptance is the best thing I’ve tried working towards so far. I cannot understand why acceptance means I’m a bad role model and deserve the treatment I receive. It’s like treading on eggshells non stop and I can’t cope with this. I just want to talk and be me without fear of attack or exile from my own community.