So in the last week it’s been Mental Health Awareness Day, and also the Wave of Light, which raises awareness for baby loss. These subjects are really close to my heart, so I did what I do… and I wrote a Facebook post for both.
Lately it often feels like all I do is raise awareness for stuff on Facebook. Pete once joked I have “Syndrome Syndrome”… I think I was pregnant and was trying to remember all the diagnoses I had to tell the midwife at the time. It’s a bit stressful having to remember them all, and I usually forget at least one. And that’s often how I feel, that I have a long list of things that are important to me and described in various terms, and I could do nothing but write Facebook posts about them all the time and yet would still never have enough time for that.
I love to share my stories. It started out being incredibly terrifying. I still remember posting about my Borderline Personality Disorder diagnosis on Facebook, more than three years ago. I couldn’t go back on Facebook for days afterwards as I felt so embarrassed. But I had to write that post, I can still remember the feeling of inspiration coming over me. I have learnt to succumb, when I get that feeling. I still resist it sometimes but I find myself doing so less and less.
I consider myself a pretty open person, these days, but I wasn’t always. In fact I challenge myself to be so open because of the things that have happened to me.
During my time at school, I was terribly bullied. It happened every day.
It wasn’t so much the specific incidents that hurt, as it was getting up every day and going to school to be rejected by 95% of my peers. I thought so little of myself that I allowed the person I thought was my best friend to bully me too, she played me and another girl off against each other, and sometimes would decide not to speak to me for weeks on end for no discernable reason. I didn’t really question it. We were all really low on the popularity pecking order but I was the lowest. And even after she decided arbitrarily not to be my friend one day in year 9, after my heart broke, I continued to seek her friendship for another two years.
Nobody wanted to sit by me. In my GCSE years I had one (lovely) friend who used to sit by me when we were together in class, but when I wasn’t with her I didn’t have anyone, I was everyone else’s last choice to be associated with. When your peers reject you, it affects everything about how you see yourself.
Lunchtime was a constant struggle to find companions to protect me from the bullies. Every lunchtime, afraid.
I was the last to be picked for the PE teams.
I was often looked down upon by my teachers because I was so unpopular, and they made no effort to hide it. Some teachers were lovely and above the playground stuff, but some – the ones the kids looked up to, often – weren’t.
This happened for 7 years.
From the beginning of year 6 to the end of year 12. I moved schools to a boarding school for the start of year 12, but it was just the same at the new school. I think because I expected it to be; I thought that was who I was.
At the end of year 12, I decided enough was enough and I moved half way across the country to live with my lovely Grandad, who sadly died earlier this year, and his wife, my stepgranny Eva. I restarted year 12 and went to a sixth form college.
I don’t know how I decided that and why. It took a lot of courage and I don’t know where I found it but I’m glad I did.
I moved in with them and decided I would wear a new personality over the top of my real self.
So nobody could see me.
See, it never occurred to me that I didn’t deserve the bullying.
That there was anything wrong in the way I was treated.
I thought it was how I should be treated, and I thought it must be obvious that I was the kind of person who got bullied, so I needed to become someone completely different.
I strove very hard to hide the fact that I was bullied from anyone, during the bullying and afterwards. Even my family. Because I thought it was a defect in me causing it.
I didn’t know who I would tell, either. That telling could make any difference. Because it was me that was at fault, and it didn’t occur to me that that could change.
I lied; I stole money; and I made up illnesses and took time off school, because I was too afraid to go in. These were my coping mechanisms. And I was deeply embarrassed and ashamed of all the lies and the theft.
I was very angry and sad, and I used to lose my temper frequently at home.
Life was so exhausting, carrying all of this shame around. I was suicidal, both as a result of the bullying and as a result of conversations had with my dad about climate change. I couldn’t see a future or a hope.
I started to believe I was very evil. That God hated me (I wasn’t brought up to believe in God but somehow that slipped in there). That I would die and be punished afterwards for being unable to save the world from climate change. That I deserved that. That only bad things would happen to me. I can only have been about 13 or 14 when I started having these thoughts.
After I moved and started to be this other person, I made friends. I was so happy to have friends. But I was so terrified all the time, that they would find out who I am and drop me.
I obsessed about what to wear, because I thought I had been bullied for being too ugly. I tried to paint a perfect picture over the top of this gaping hole inside, a perfect image – made up, slim, glamorous, athletic. If I looked OK, everything would be OK.
I look back at pictures and think, I was gorgeous, but I felt so hideous.
I drank a lot to get by socially.
I thought I had been bullied for being too clever – while I simultaneously thought I was really stupid – so I avoided studying. To be honest I couldn’t care less about studying at this point, as getting good grades had brought me no happiness, and no matter how good my grades were at school, I was always told by my school reports that I could have been trying harder.
(I couldn’t.)
I was referred to a counsellor at college. She meant a great deal to me, but it never occurred to me to tell her about the bullying and my fears about the future. I thought had to hide it even from her, because she would reject me if she knew.
I couldn’t make a relationship last, because there was nothing to build it on, and I didn’t genuinely connect with people as I was trying so hard to be someone different.
When I was 21 things started to change. I met my first boyfriend. He was a very real person. He had been through a lot. And I started to break down.
I think it was him I told first about the bullying, but it might have been one of my best friends. We worked together at the time, the three of us. The weight off my shoulders for speaking the words out loud was immense. (Thanks to both of you for being those safe people, if you happen to be reading!)
I told another friend the next year.
I told my parents. That was hard and I had to write it in a letter.
I have had a lot of counselling since then. Years and years. I’ve learnt to talk about the things that happened to me until the cows come home.
When I met Pete, at 23, I realised I didn’t have a clue who I was. I knew absolutely nothing at all about myself, and I decided I wanted to find out. I was having a breakdown at the time and things were pretty bleak. I had also lost some of the people I thought were my closest friends during my breakdown, and that was obviously some of my worst fears come true. But, by this time, I had started to develop spiritual beliefs, and I decided, God made me good and I’m going to find out who that is. And somehow that will guide me out of all of this.
I knew I needed to do it because I wanted children so desperately, but I needed to understand what had happened to me, to prevent it happening to them.
I had this wonderful partner and we dreamed of having a family but we knew it would be hard for us. So I felt like, I need to earn these kids, who will be so special if they come. They deserve more than a mama who lives like this.
Pete was amazing at understanding. Every day I walked with my dog and I thought about God and how he had made me good, I really thought about it, and I talked to Pete when I needed to – there was nothing I couldn’t share with Pete – and he didn’t try and fix it but he listened. And I saw professionals. And I learnt, not so long ago, that what I had been doing during this time was rewiring my brain. Creating new connections.
No longer living under shame has been amazing. It’s been very gradual. It didn’t change all at once. Layers of shame were lifted gradually. Now, I refuse all shame, but it’s taken a lot of practice and support to get here. I know I am OK as I am.
I believe that everybody else is, too.
When I started telling my stories publicly, it was a way for me to bring things out that I felt ashamed about – my BPD diagnosis, for example – and to refuse to give them that power. Because I found that once I got past the initial embarrassment, I felt much, much free-er. Unencumbered.
When I found out about my aspergers identity, that was tough. That hit me with a load of shame. But because I now have that grounding of believing I was made good, I shook it off pretty easily. It didn’t feel like it at the time, it felt impossible, but actually looking back I had become resilient enough to withstand it and to see it in my own way.
And right away from the moment I realised I have aspergers, I knew I would deal with it by writing about it publicly. I knew that it would be tough but that it would help dissolve any shame I felt. That it would help me claim what I perceive to be the positives in my own identity – and those of others like me – and that it would help me take hold of what I should have had from the start; a joy in who I am, in the way I am made and the things I can do.
The world sees autism through eyes of shame, but I don’t have to align myself with that, and I don’t believe God aligns with that, either. I choose the power I give things – do I agree with the way autism and other such diagnoses are presented to me, or do I take what is useful to me and leave the rest?
Although it was a tough moment realising I have aspergers, I knew that at the same time it was an amazing gift and a promise of new life, but that that would only come through fully embracing it.
When we take a step out to break agreement with shame, we are able to liberate others, too. We see their issues on a new way. We can offer hope. I want to do that. I want to do that with autism, and with everything else I have been through too.
And that’s really why I talk about my stories. I do it because it’s freeing to me, and that helps me in all sorts of ways. It helps me love others, because I’m carrying around less pain myself. And I do it because I hope it’s freeing to others, that I can help enable a non-judgemental sharing space.
I want to use my life to make a difference in the world. To prevent people from feeling the way I felt. All I really have to offer in that aim are my stories. I don’t have a degree. I don’t have a career. I don’t have any status, really. But what I do have is my voice. And that I will offer.
Spectrumy 
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