My journey to being honest with myself about who I am

 

 I have realised I live with a certain low level of constant frustration that is starting to wear me down and it’s entirely my own fault. It to me seems to be a combination of major things coming into my life and some are my fault, but others aren’t, and they are something that I find incredibly wearing and I think that this is not talked about in society.

So, I have been very honest and open about living with Chronic pain and the limitations it puts on me as well, but we also do see that there is something else that leads to frustration in people with disabilities lives and this is something weird that we really do need to discuss, it’s a combination of being disconnected from the rest of society. I know that the Royal commission will help with this, but we are seeing a definite normalization of identity and I really do respect that, but I am not seeing as much as a lean towards disability acceptance and we are seeing that people still think it’s ok to talk over us and not to amplify our voices.

 

I also know that by being in constant pain, and the constant struggle of my chronic illness and lack of connection has led to a definite frustration around life, as I am simply jealous of what others have that I know objectively I can’t have or wouldn’t be able to manage and I am going to do something that I should have done along time and I am going to hopefully use the correct terms, as I know that one of my frustrations is from being in the proverbial closet for so long.

 

I would love an intimate relationship and someone to share life with as an equal consenting adult and I have known for a long time how I identify and it’s challenging to say it out loud, but I am attracted to both genders and I long for that intimate connection, not just affection but connection that I see others have around me.  Humans are a social species and we saw during the Covid lockdowns that we created a lot of mental health issues from not being able to connect with others, we are also now seeing a generation of children that are having to be taught active social skills that aren’t autistic or Adhd but were born during the lockdowns so that was their normal.

 

I know that it’s perfectly normal to be single, but I see that a lot of people with disabilities aren’t taught about active consent there are some that don’t have the capacity to understand but I know that those of us who are higher functioning and live on what I have heard termed the bridge. This being that we are to high functioning to fit into the “disability community, so supported workshops or day services, but aren’t functioning enough due to disability illness or mental health issues or like myself a hot mess of disability, chronic illness and mental health issues. But not functional enough to fit into the “normal world” so live on a bridge between the two worlds, (I heard a disability advocate with autism explain this so if anyone had the source I would love to credit her)  

But I am really working thought this with a trained professional and to heal some relationships in my life, but when I was in my late 30s and had to give up work, I did an interesting social experiment and stopped calling people to arrange to do things all the time. It really saddened me that only my family and some people for privacy reasons I won’t mention notice. I did have some very close friends that did notice but due to some mental health issues that we discovered later where caused by IUD poisoning as I am one of the females that have suffered heavy period syndrome  and have what is thought to be a pituitary adenoma as we have never been able to see it on imaging we can’t really treat it but can control it thought birth control, however I didn’t realise that I was going slightly psychotic  due to the hormones and a medication combination of medication that was found to cause psychotic  and paranoid thinking, as I have eleplisy and this is controlled by medication. I can’t think of what the combination is but it is one that now is used with extreme caution because of this issue, and my experience of this isn’t like the movies it’s more like making weird decisions that you feel because to you that thinking is normal you don’t realise how disordered it is I thought that I was unlovable due to some of my behaviour’s and you can love a person dearly but hate there behaviours and actions. We see this with parents of teens all the time as well.

It doesn’t excuse the behaviour at all but it does explain it to me as I know that I struggle with social cues and have recently discovered that I  have since I was a child had sensory issues and couldn’t handle large crowded nosy environments, it also explains why I am despite it being spring sitting in fury pants and a singlet top as I write this post that I am not even sure that I will even post, for deeply personal reasons.

But I am making peace with the fact that I am attracted to both genders and am open and able to seek out  these relationships and I am also grateful that I  live in a time where I don’t have to hide this fact about myself and it’s really amazing that I have been able to write this and I am grateful that I know that I will have to support I need to be public about it.

It frustrates me but I do totally get the need for it that in supported accommodation you can’t have overnight guests and I see that this is something that we really need to talk about with disability and relationships I am staying away from my person experience with relationships and I have learnt that lesson and I am  starting to be deeply careful about what I put into the universe as the reality is once it is out there you can’t take it back.

However, I feel by being deeply honest with myself I am making peace with who I am as I know that this has frustrated me for a very long time. I know that our mental health can affect our physical health and that our physical health or lack of it can effect our mental health and this isn’t talked about when we talk about our disabilities and we are seeing that there are some amazing advocates out their that when they are open about their mental health struggles we see that it’s a mixed bag of responses to it as people are challenged by not having experience with people with disabilities and can struggle to relate or to even engage with them in a polite manner, and some that mean well in suggesting prayer or herbs but this doesn’t go down well with me due to the fact that they are fundamentally missing the point. It also could be quite dangerous for me to combine the herbs with the medications I am on.

  This being due to the fact that this is dismissing the struggle for acceptance that we may have fought for within ourselves the message that this is sending is that you will be acceptable to me as someone to rescue from yourself, when I can heal you. We are seeing more acceptance of disability but we aren’t really seeing major changes as well, as people with disabilities have a diverse range of needs and we need to answer the question of what is a disability and when we answer that we start to have conversations around who then qualifies for care programs and then this also carries the issue of who pays for it and who is to blame when things go wrong. I things that I feel will come out of the Royal Commission, and I feel that there are a lot of providers that are on edge at the moment, but I am not across it enough to be able to comment on this at all.