Delve into the anger, and feelings of vulnerability often present themselves. Anger is the mask that conceals sadness and fear. Let the pain rise, no matter how raw it feels. You will survive, even when it feels like the world is too intense.
I just got a call back from one of the charities in my borough I had had an assessment with. They are there to find support options for people with physical or mental health needs, so I thought it might be useful for me. The woman I had the assessment with had decided to take my case to their MDT meeting to discuss what support options might be available as there was no straightforward pathway she could envision for me due to the complexity of my situation. She told me that she spoke about both my physical and mental health needs but also relayed that I appear “high functioning” and talked about my insight and self-awareness.
The outcome of the meeting is that there aren’t any support options they can offer me. I don’t need psychoeducation, gardening groups, or mindfulness sessions. But yet I’m also too “high functioning” for a support worker. They don’t have any support options for people like me and they weren’t sure about other charities but knew I wouldn’t get anywhere with the NHS. This is the second charity this has happened with; it is as though the world forgets that’s people from my demographic exist. That yes, you can be both “intelligent” and “articulate” but also disabled, mentally ill and in need of support at the same time. The only options who do have some understanding of this seem to be the EDS specific charities like @ehlersdanlosuk who run support groups for people like me.
I wish there was more support out there for those of us who fall through the net. It seems as though to get anywhere you have to be either in a serious and prolonged mental health crisis, or physically unwell to the point where you need nursing care. There’s no in between and it needs to change. Don’t get me wrong I totally recognise my privilege in a number of areas, but I do think it’s important to recognise that sometimes this can actually also work against me. There have been so many times in my life where how I look, speak or act has stopped me from getting the type and level of support that I‘ve needed. I’m sorry that I don’t fit society’s narrow stereotype of “disabled”. But it’s not us that needs to change; it’s society’s perception of disability.