Feeling hopeless no one to talk to

[Themolequeen]

Hi,

This is my first time posting.
I guess I am just venting what I am currently dealing with
I am not sure how much information I am suppose to provide
( I have a tendency to "overshare" with detail)

I am 27 and was recently diagnosed with ASD.
I have also just recently had a kidney transplant ~6 months ago.
I am so grateful to be given a second chance at life but I haven't had the chance to live that yet.
There has been ongoing complications that just haven't stopped since
It's gotten to the point that I don't really feel "human" anymore.
I am typing this from my bed in the transplant ward.
I have lost count at the amount of admissions I have had.
This place feels more like home to me then the outside world.
On-top of all of that I am also confused about my relationship with my partner.
I'm not sure if I can objectively make informed choices on his behaviour when I have a deficiet in social communication.
It seems like when I say things (maybe i do play a role) I say them objectively without emotion intended.
He takes them the wrong way and reacts emotionally saying not nice things to in return.
Lately I have noticed the words he has said before have been replaying over in my head.
I have tried many times to explain to him that I wasn't attacking him to point where I feel shaky.
My brain just can't come up with other words to explain things so he understands.

I have a special interest in chemistry,kidneys, the human body and the "connection" between those topics.
I have been pursuing a science degree whilst waiting for my transplant.
The thing I was the most excited about was going back to uni and being well enough to basically "shout it from the rooftops" how much I just love that stuff. I did go back for 2 weeks before being hospitalized again.
The feeling just wasn't mutual I wasn't able to talk about my interests and when I did I was shut down.
It feels like everything that has happened has affected my self confidence.
I don't have much support and this is the first time I have been able to just get it all of my chest

Thank you for listening 😃
Jess.

[smallwolf]

Hi Jess,

welcome to beyond blue.

There as been a lot going on in your life recently. 😞 I have an older friend who was in a similar position to you about the hospital becoming your second home. He had breathing problems, shortness of breath, reflux etc. To make a long story short, there was a time, that like you, post of his posts on social media were from the hospital. So it is not an ideal place to have to spend your time.

When you said that you spoke objectively without emotion, that struck a chord with me. For myself, I am un-emotional. I have this picture in my head in which I am totally grey and without features. The background does not matter. Someone suggested I look into the colors. The point was that grey was/is (?) my favourite color. And being un-emotional was was of the traits associated with that color. And yes, I also dwell on the negative side of things. And sometimes like you (in the family env.) I get a reaction I did not expect. And then I will replay that scenario over and over, wondering what I missed.

I also know someone who has child with autism. Looking at him, you would not say there was anything wrong. There was also a TV show with a couple from the UK (one off special) where one person in the couple had autism. In each case, unless you told someone else, you would have said it was just a quirk of the person, something that made them unique. Whatever you have does not define you.

My question to you is - are you still interested in chemistry and the human body? Is it the motivation that is not present? More than just self-confidence lost? Difficulty getting back into or wanting to study?

I am listening and hope you felt a little better getting that off your chest. If you want to chat some more, just reply, and I will see it.

Peace,

Tim

[Alexlisa]

Hello Jess, PART 1

You have so much going on, it must be so difficult. I’m glad you’ve reached out here for support. Welcome ☺️

I was wondering if you have any psychological support? Having such significant medical issues that have a big impact on your life must be very difficult to manage the emotions and thoughts involved every day. And then having an ASD on top of that is extra complication for you. I think it would be really useful for you to talk to a psychologist, so that you can get some real support for all you must be experiencing.

I’m not sure how it would work from hospital, but it would be worth asking your treating team if there’s a psychology or counselling service you can access whilst you’re inpatient. And then when you get home you can ask your GP for a referral to a psychologist. I think it’s important that you have this kind of support, you shouldn’t have to go through it all alone.

I can see how being in a relationship when you have an ASD would be pretty complicated. There can be quite a difference in how you would communicate with and interpret each other at times. I want to tell you though that your experience of the world is just as valid as anyone else’s. While you both need to be kind to each other and at times give each other the benefit of the doubt, just because you have an ASD doesn’t mean your feelings or the way you communicate is ‘wrong’. It’s just different, and you deserve to have that respected by those you have in your life. In relationships both people are generally doing there best to be understanding of each other and kind, and i’m sure you’re doing your best.

Your ASD is a condition just as valid as your kidney condition and I hope you can find people in your life that will accept you as you are. I was wondering, does your partner know much about ASDs? It usually really helps if partners and family can have good knowledge of what life is like for people with ASDs because it can help increase empathy, patience and reduce misunderstandings. Your experience of the world is unique and it can be empowering to share it. There are also services out there for people with ASDs to work on their social and communication skills, if that’s something you’re interested in. If you get in touch with you state’s Autism organisation they should be able to give you some contact details.

... continued in next post...

[Alexlisa]

PART 2

About uni, I also found it to be not really what I thought it’d be. I was extremely passionate about the area I was studying in, but found those around me kind of indifferent. I think part of it was made harder by being a mature age student (like you) because the younger ones (who were 99% of the students) were quite immature and lacking even pretty basic knowledge of the area. You must find that hard too because your interests are SO important to you and your knowledge and passion must be vast. I wonder if there’s science organisations in our outside of uni, or online that you could join that would attract more dedicated students that would be much more engaged and knowledgeable?

It must be very frustrating having to go in and out of hospital, but please remember that uni will always be there waiting for you when you’re well enough. You’re young and passionate and have so much life experience. I can really sense that.

Please take good care of yourself.

Alexlisa

[Themolequeen]

Hi Alexlisa

Thank you for all your kind words.

I'm not quite sure how this correspondence is suppose to go, usually I just answer all the questions that were asked.

I don't currently have any psychological support.
I have spoken to my team not once, but twice about seeing someone. I also was seeing a counsellor at uni and I have reached out them with no response as well.
I have also gone to my GP to get a mental health care plan for my ASD to further better my communication and social skills but the appointment isn't until June.

It seems that I have done all that I can on that front and just have to hold tight until I can get some support happening.

With the Uni thing that is exactly what it was like.
I think my expectations were possibly too high because of the reasons you mentioned.
I have still been teaching myself just for fun.
I love learning and the acquirement of new knowledge but the environment I'm not sure is a good fit for me.

My partner does know about my ASD and he says he has read things. I've also spoken to him several times about the way I communicate.

The personal attacks that he responds with are difficult to handle. I think it comes from a defensive position. I'm not a psych I don't have the education for that so I don't like to make judgement on those things.

Have a nice day
Jess.

[smallwolf]

Hi,

Just thought I would check in and see how you are going?

You said your appointment was in June, and that probably seems a long time away. It is also handy that your partner has been reading up on it as well. The more you know about it or understand, the easier (relatively speaking) you can deal/work through it. Hope you have a good day.

Tim

[Themolequeen]

Hi Tim,

I am doing okay, thanks for asking 😃 still having health complications but hanging in there!

I attended an appointment with parter with a psychologist for him and it was reassuring for me when I explained the situation to be told that I'm not "attacking"him.
He has started treatment in the form of medication as well as therapy.

I've also managed to get an appointment to see the counselor at uni and I think that will help in having all the built up emotions from the situation validated.

I'm hoping that these small victories are the start of some positive change moving forward.

Thank you,
Jess.

[smallwolf]

Hi Jess,

Small improvements are good.

Validation also helps, and for me, being able to get it all out or off my chest is helpful. And that someone will listen to you and respond with compassion.

It is also your choice, but I would also encourage you to post here between sessions if you want to vent, or have a question, or whatever. I can have lots of things spinning around my mind, but when I can write them down (and I have my own story elsewhere here) those many items becomes smaller and out of my mind. Of course, there is the advantage of other users responding as well.

Tim

[therising]

Hi Jess

Whenever I hear someone is passionate about better understanding certain aspects of them self I feel very excited. There is so much to learn in regard to how we tick. Whether it involves mind, body or spirit, we are definitely complex creatures with so much potential.

I'm just about to go off and prep for the day but will return later. I'll leave you with the title of a fantastic book which may go toward fueling your passion for self-understanding; it's called 'Becoming Supernatural', by Joe Dispenza. He takes the mind/body/spirit theme and turns it into Neuroscience/Epigenetics/Quantum Physics. Sounds complex but is written in lay person's terms, so it's easy to understand. Amazing how all 3 aspects of self are so interconnected and reliant on each other.

Take care

[therising]

Hi Jess

Effective communication...my goodness, one could write volumes on the subject. Whether it's due to the way our brain processes things or due to cultural differences for example, there are a number of reasons as to why communication breaks down or just doesn't seem to have the impact we desire. Understanding the differences is what goes toward us being on the same page as the person we're trying to communicate with. It's good your partner is consciously gaining an understanding in regard how you communicate with him and how he communicates with you (somewhat defensively, as you suggested).

Words definitely hold different meanings for different people. Strange when you consider that if someone had never across the harsh modern day definition of the term 'loser' (someone who's hopeless), being called a loser would lead them to believe that they're simply someone who loses things. 'Loser' wouldn't have that much of an impact on them. Once the learn the new definition, the word can become not only offensive but also soul-destroying. Of course, as we experience life, words develop not just meaning but they also become connected to emotion (which complicates things even further). Communication certainly becomes complex when we factor in not only our own mental processing and emotions but also the mental processing abilities, belief systems and emotional intelligence of the person/people we're communicating with. You can see why effective communication is such a seriously skillful thing. There is much to learn, for sure. By the way, with you being so conscious of how you communicate, this actually puts you a step ahead of the many who don't care enough to want to explore the complexities.

Jess, from what you write, you sound like an open-minded person on a constant search for education and enlightenment. With the physical challenges you have faced and still face during your recovery, you are incredibly strong and to be greatly admired for so very many reasons. As you work on further strengthening your body, your mind and your spirit, I wish for you many miracles and a path ahead filled with beautiful gifts for the soul.

Take care