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How I got here...my road to nowhere

Updated: Sep 27, 2021

It was a long road to where I am now and it was not an easy one to travel, both for me and anyone around me. I am an autistic mum of one who suffers from chronic pain. Four years ago, I had my first and only child after years of having chronic pelvic pain and endometriosis. I was told by several consultants that conceiving naturally would be very challenging and that given the state of my pelvic organs I had to be prepared for a long journey into IVF. I had surgery in November 2015, and I fell pregnant 8 months later to everyone’s surprise including mine. I had my beautiful baby boy after a very difficult pregnancy and a traumatic birth. Despite all that I was so happy he was finally here, and he was perfect.


For me, being a new mum came with a whole bunch of challenges on top of the ordinary challenges like sleep deprivation- that was hard enough! After a year of trying to fit in with regular mums (I really do not mean that to be offensive to regular mums) I realised I am not an ordinary mum at all. Due to endometriosis, adenomyosis and a bunch of other health problems I was, and am still, in pain every day. I found getting out incredibly hard. Getting my son ready and in the car seat when mind-numbingly tired with intense pain was nearly impossible and I do not know how I managed it. I became severely anxious and very depressed. I just hid behind my odd humour and a tired smile. I had moved to a new town, so I already felt isolated, and I was desperate to make new friends. Amazingly I joined five different baby groups, but I just could not relate to the other mums. I just found it so hard to talk to them and make friends. I did not get the cues right or I could not join the conversations. I think I just sat there and stared at the women with friends trying desperately to work it out. I did end up friendly with a couple of other mums, but it was hard to arrange meeting up due to my pain and needing to rest. When invited out I often cancelled. I was just so different. I had no normal routine with my baby and all the other mums were very routine orientated. I was all over the place and it was shameful to me at the time, to admit I was struggling. I just ended up feeling so low.


Trying to be normal like regular mums and forcing myself into a mould that did not fit, just totally exhausted me and led me down a miserable path to my first breakdown in 2018. I did not tell anyone about this breakdown as I was so scared my son would be taken away by social services. I was worried they would see me as an unfit mother. I have never loved anything in my life as much as I love my son. I wanted to be a good mum to him; I wanted that more than I have ever wanted anything. It was only my husband who saw these dark days. He saw me lying on the floor, screaming and crying into the carpet till I could not cry or barely breathe any more. One of the problems with seeking help for your mental health, is the fear of the consequence. The worry of what effect it might have on your job, your family, your future; it might put a bad mark on your record. I did not fully recover from this breakdown but I kind of patched it up with help from my husband to a point where I could pretend for short bursts, but I was not better really. I became more and more inclined to stay home and shut out the world. I felt like a I was trapped on the outside of life, observing life from behind a window.


I had my second breakdown 6 months after the first and I started to feel suicidal. With help from my husband this time I sought help. I referred myself to therapy and it was with that therapy that my life started to change. My therapist spotted something no one else had ever spotted– that I am autistic. I was lucky to be assigned a therapist with experience and understanding of autism in women. She was so patient with me and accepting of my different communication style. My therapist changed my life really. I was in denial I was autistic for a while, mostly due to the stereotypes. I now see that it is one of the big explanations of why I am different to ordinary mums. It is why I have always been different to my peers.; why I have always found things so difficult; why I have been continually bullied throughout school and work. It might also account, at least partly, as to why I was in an abusive relationship without even realising it for a big chunk of my 20s. The journey towards Autistic diagnosis was a difficult one but at last I had a name for what makes me feel so different. It turns out though, that everything I thought I knew about Autism (and I have an undergraduate Psychology degree) is totally wrong! Most people have Autism wrong; especially autism in women and girls. The stereotypes are not accurate, and it is also nothing to be ashamed of. Our brains just work differently. If I had been diagnosed earlier, I really believe I would not have ended up so suicidal as a new mum in a whirlwind of sensory overload and post-natal depression. I might have had the support I needed. I would have known I needed certain boundaries and I would have had a level of acceptance of myself. I think I would have tried to make friends differently and not overwhelmed myself going to all the mum and baby groups but instead used online communities and found support from different sources. I even might not have had previous trauma due to bullying and domestic abuse but that I will never know for sure. The thing is that some might find surprising is I absolutely love being a mummy and I loved having a baby. I wanted it for so long. I just did not have the right support that I needed. I was trying too hard and wasting energy trying to fit in with women that I was never going to fit in with and this led to the severe post-natal depression.


It has taken 2 years since realising I am not ordinary. There have been a lot of baby steps towards acceptance of who I am. I have taken a tiny step at a time to regain my mental health and to overcome my suicidal ideation. I am learning to live for myself as well as be here for my son and my husband. I have learned that there is no perfect, which for an autistic person it is hard to learn that things are black or white - there are grey areas! I’ve found other mums online that are on the spectrum and mums that have chronic illness, so I am not alone. They all have their own ways of coping and I am learning from them. I am learning how to manage my anxiety and how to exist with depression till hopefully one day the depression becomes so small that there are more days without it than with it. I have learned that being an ordinary mum is okay and being a less ordinary mum is just as okay. I have learned so much and my life has changed so much. I still face daily pain, anxiety and depression but they don't completely rule me like before and I now have hope for the future. I am now in a place to share what I have learned and to help other less ordinary mums. I want the mums that feel like they don’t fit in to know that that is okay, and they are not alone. You don’t actually need to fit in to be valuable. We can’t all tread the same path. We are all valid and all have our own story to tell. This is mine.


#ActuallyAutistic #Autistic #AutisticAndProud #LivingWithPain #PostNatalDepression #MentalHealthMatters #Endometriosis #ChronicPain #CPTSD #TraumaRecovery #DepressionRecovery #Anxiety #MumBlog #SpoonieMum


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