Is anyone out there?..

People say you should speak out if you have mental health problems. That you should confide in those close to you. That you should ask for help. But what if those close to you can’t help? What if those people are part of the problem? Because mental health problems are polarizing. Not everyone wants to save (or be saved). A lot of people find mental health issues unsavory. Unattractive. Weak. Irritating. Inconvenient. So when a highly vulnerable, unstable person with already fragile mental health confides in someone close to them and that person belittles and begrudges, makes personal or derogatory comments, what are you supposed to do? Where are you supposed to go?

To be clear, I’m not trying to point the finger here. I accept and appreciate that it can be a huge burden to support someone with mental health issues. It can be confusing, time consuming and emotionally draining. And because mental health issues rarely (in my experience) go away for good, that can feel suffocating for the supporter. Especially if they are supporting an Autistic person with mental health issues like me. Which is why my husband is regarded by most as a living Saint for coping with my special brand of crazy for the last 15 years…

When feelings run deep

Now, there are lots of misconceptions about Autism. One of the most frustrating is that we don’t have empathy, that we don’t have feelings. Let me tell you that’s a crock of shit. We are some of the most highly sensitive humans on the planet. We feel things so deeply, so strongly that it can physically hurt. Our happiness is euphoric, our sadness devastating and our anger, explosive. Rejection (perceived or actual) cripples us. Injustice consumes us.

So what happens when a highly sensitive, emotionally vulnerable, socially awkward, Autistic person encounters an upsetting situation or event that sends their mental health into free fall and the person or persons who usually support them were the one(s) who actually pushed them off the side of the cliff?……….

After the freefall

Your GP can issue meds to help you cope (assuming you’re not medicated already). Now I’ve been medicated for the last 7 years and I would not be alive without these meds. Fact. I’ve tried to come off of them twice during that time, slowly and sensibly, once to get pregnant and once because of pressure from others who’d managed to wean themselves off and live medication free. And I’m happy for those people, I really am. But I’d be lying if I didn’t admit it grinds my gears the way society views antidepressants and how it’s celebrated when someone comes off them. Because I tried twice and turned into paranoid psycho bitch from planet Evil!

Let’s talk therapy

If your mental health issues are judged to be mild to moderate (this is a medical classification which in my opinion, doesn’t necessarily reflect the hurt & suffering of the patient), you can refer yourself to ‘Time to Talk’ for therapy. But the waitlist is many months long and they have a very specific remit (‘Bipolar? Too severe! Sorry love your names not down you’re not coming in’).

On the one occasion the Sussex Mental Health line picked up my call (after many months of only hearing an answerphone message to call back later) the woman told me to stop crying, run a hot bath and eat some comfort food, because ‘there is no-one coming to help you right now’. Firstly, this is NOT good advice for a secret binge eater. Secondly, she left me completely without hope because when I stopped crying enough to breathe I challenged her – ‘so you’re telling me unless I try to kill myself no one will help me?’ ‘Basically yes’ she replied.

I’ve even called the Samaritans once, which for some reason felt desperately pathetic – I guess because it symbolized that I had no-one else in my life to talk to except a stranger on the phone. The lady who spoke with me was patient, kind, gentle. She listened. But what I needed was answers. I was panicking. Lost. Stuck in a vicious cycle. I needed practical advice. A plan. And of course the Samaritans can’t do that.

Time to rewind…

I can track my mental health problems, specifically my anxiety and OCD, back to when I was a young child. I can remember hanging over the banister at bedtime yelling downstairs ‘I love you mummy darling. I love you. I love yoooooou’ on repeat because I was terrified she wouldn’t be there when I woke up. My father (let’s call him Mr Domestic Violence and the reason I was so scared Mum would disappear) would yell back ‘shut the fuck up’. Then I’d creep into my brothers room and stand there in the dark, trying to hear their breathing. If I couldn’t, I’d put my fingers in front of their noses and try to feel their breath. Because I had to check they were alive before I could go to sleep. Eventually I’d clamber into my bed and start counting out on my fingers ‘I am going to have a dream. I’m not. I am. I’m not’ again and again until I landed on an ‘I’m not’ finger that could be trusted. Because vivid and violent nightmares have plagued my whole life and as a child, sleep was not a safe place for me. As an adult this has improved but the night terrors still come, to the point my husband is woken by me crying in my sleep, or I startle awake in utter terror convinced there is an intruder but I can’t move because I am physically paralyzed as if someone heavy is laying on top of me.

As a teenager I took myself to the doctors, sobbing that I thought I was ‘mad’ because of the violent, emotional meltdowns I regularly experienced. (I was not diagnosed as Autistic until I was 42, the lack of early diagnosis compounded my confusion and sense of isolation with regards to my mental health). The doctor just laughed at me and said I couldn’t be mad because mad people rarely acknowledge their madness. That’s when I started to use alcohol and food as a coping mechanism. Not on a daily basis. But the alcohol became a prop to survive social situations and enable me to be the friendly, gregarious, slightly outrageous friend I felt I was expected to be. The binge eating was my dirty secret, something that both comforted and repulsed me.

In my mid twenties when my first marriage ended I fell into a deep depression. That was the first time my GP offered medication to manage my low mood. But after 2 weeks of popping Prozac I succumbed to peer pressure and stopped taking them (‘tablets won’t help, they’ll just make you a zombie, only you can pull yourself out of this’ etc etc). And so I struggled on, self medicating with alcohol when required to socialize, scoffing mars bars and cherry bakewells in large quantities when no one was looking. That’s not to say I didn’t try and help myself. I enjoyed exercise and maintained a healthy weight. I read self help books in my desperate quest to find out WHY I had anxiety and depression. I even remarried, someone who professed to love me and (by his own admission) wanted to give me the happy life I deserved after my traumatic childhood and adolescence.

Ironically it was a series of traumatic events that occurred during my second marriage that started me on the yellow brick road to answers.

Significant trauma 1:

In 2010 we lost our first son Pablo to a rare lethal chromosome disorder during pregnancy – a son we’d planned and desperately wanted. One day I will tell his story properly. What I can say now is that his death was the single worst thing that’s ever happened to me. As an Autistic woman with hypersensitivity I can still feel his body slipping out of me 9 years later. I lost a massive part of myself when he died and a divide opened up between my husband and I because he just didn’t feel what I felt. His grief was so different to mine. Mine was the colour of fire, the sound of explosions, it gave me physical pain. The guilt, the regret, torturing myself with philosophical questions about where Pablo’s soul was and if he’d return to me. My husband’s grief was shades of grey. It was quiet. Private. He forgets easily and focuses on the future where as I feel every stabbing pain of my past like it was yesterday.

The NHS bereavement counselor I saw after Pablo was kind. She listened. I cried. Her abstract questions and ‘games’ (placing plastic figurines in a sand tray, sifting postcards for pictures I could relate to) were lost on me. I threw myself into tending his grave and trying to get pregnant again.

And then comes a rainbow

In 2011 my rainbow L was born. I had never been so happy. He was everything I’d ever wanted. Suddenly I had this tiny human who loved me unconditionally and it was so easy to give myself over to him completely. I had never experienced such love and I felt like my soul was finally starting to heal.

What I failed to notice was that my anxiety and OCD had skyrocketed. My safety related rituals and behaviors controlled every aspect of my day. I didn’t trust anyone else to care for him and would supervise every nappy change done by Dad or Grandma like I was their Chief Examiner in a life or death test. I was terrified L would stop breathing and when I settled him each night I’d count kisses and the flashing light on the monitor, recite a mantra about his future, one more kiss, one more stroke, over and over and over until I felt it was safe to leave the room. Meanwhile my husband was quietly suffering. He felt alienated, rejected. He had gone from adored to invisible. My high anxiety meant I would frequently snap and berate him, leaving him feeling not good enough.

Home truths

I remember around the 6 month mark, in my bubble of happiness, so in love with our son, I asked my husband what he thought about trying for another baby. His reply is seared on my heart… ‘I’m never going through the last 6 months again’.

I was beyond devastated. I couldn’t believe that he’d experienced things so differently to me. Once again I started to question my sanity. Am I mad? Is what I’m experiencing real? This sent me into a deep depression and eventually when L was just over one year old, I tried again to get professional help. This time my husband went with me. Whilst the GP was sympathetic, he openly admitted that he didn’t know how to get me the help I needed. He wanted to refer me to mental health services but he didn’t know who to refer me to. I can’t describe my frustration and hopelessness at that point. The way I saw it, if a qualified doctor didn’t know how to help me then maybe there was no help. Thankfully, my husband located the details of a private psychiatrist and so began my sessions with Dr R, a man who has rescued me from self destruction and mental annihilation on multiple occasions since.

God bless psychiatry

It made the world of difference seeing a psychiatrist and I was quickly diagnosed with depression, anxiety, obsessive compulsivene disorder (OCD) and symptoms of post traumatic stress disorder (PTSD). Dr R immediately put me on medication for my depression and anxiety and I began a program of CBT sessions (cognitive behavioral therapy) to address what the hospital saw as the priority – my OCD.

Of course at this point my Autism diagnosis was still 5 years away. If they had known I was autistic it’s questionable whether CBT would’ve been used. But my experience overall was positive because for the first time I was able to revisit my past and I started to recognize that my distrust of others, fear of rejection and need for control stemmed from my childhood and adolescence. In truth, these things stem from my Autism first and foremost, but my experiences growing up definitely compounded my issues included my poor emotional regulation.

Happy times aka the calm before the storm

And so my husband and I entered into a period of relative stability. I was calmer and kinder, he was more patient and understanding. L brought us intense happiness and we could focus on loving each other as a couple and as a family. My mental health felt good and I actually started to like myself and to build tentative friendships with work colleagues and extended family.

That’s when God decided to throw me another massive curveball, because apparently he only tests those he thinks can cope (she said through gritted teeth)…