AUTISM & BIPOLAR
Updated: Apr 2
Please note that the issues mentioned in the introduction act as a trigger warning for this interview. Be mindful of what you do and do not need to read today.
My friend Annalisa, aka The Beanie Bard, used to be a nurse but she's now reformed. Working as a writer and photographer takes up the day, while at night she plays at being a poet and a children's author. Her first book, 'The Sky Painter: A book about big feelings for small people', is available on Amazon now. As a massive advocate of mental health awareness, today she's taking part in this interview to share her experiences living with autism, bipolar, PTSD, traits of BPD, OCD and self-injury and suicidal tendencies.
1) Hi Annalisa, how are you?
Let’s go with tired.
2) How are you really?
Genuinely tired lol. But also, so stressed and overwhelmed. I really want to make this business of mine work so I am spending hours working on a lot of stuff I knew nothing about until this year. It's a really steep learning curve and I have a lot of self-doubt and confidence in myself to make it work. I’ve not even really had time to write in ages unless it’s connected to my website. No poetry at all. My head feels about ready to explode so I’m having to keep tabs on myself not to let it slide into a low because I’m burning out.
3) What made you reach out to share your story through this interview?
I saw the stories you have been sharing and I think it’s such a massively important thing to do. That’s what made me want to contribute to it. I believe in the power of just opening up and letting people see the truth, unfiltered, so they can acclimatise to it instead of expecting it to be whitewashed. The neurodiverse have spent years adapting to the world. I think without the knowledge that the world can’t return the favour.
4) What are your mental health diagnoses?
I am primarily diagnosed with bipolar. There’s a lot of discussion over type one or two, and officially I was originally diagnosed with type two but I’ve suffered a couple of full-blown mania. One with auditory and tactile hallucinations, thinking I could hear people talking through radio static and there were bugs in my hair or on my skin.
I’m also diagnosed, officially by the psychiatrist I’m under, with traits of borderline personality disorder, although the accuracy of that is uncertain due to being diagnosed this year with autism. The psychologist at the psychological service I attended in my local area also diagnosed PTSD and OCD. Having completed one cycle of DBT (dialectical behaviour therapy), I’m now having trauma-based therapy to try and relieve some of my PTSD. Covid has stopped that since it really needs doing face to face.
I'm diagnosed with general anxiety as well. It doesn’t seem much of a feature to the mental health service, more something they tack on, but it affects me socially and with panic attacks. I think it’s often an underused and dismissive diagnosis. Lastly, it’s not a diagnosis but I also have problems with self-injury.
5) How does having post traumatic stress disorder affect your life?
The initial trigger was my daughter’s birth where my life was genuinely endangered owing to full blown eclampsia, this can affect me in hospitals and during exams – especially smear tests. It took me from just before my pregnancy with my daughter until she was 11 this year to have one. I do NOT endorse this. Have yours, it can save your life. However, for me, even as an ex-nurse, hospitals and medical appointments cause me intense anxiety. I was also triggered by a lot of sights I had seen during fifteen years as an emergency nurse. I can now find lots of sustained noise quite distressing, especially loud beeps or sirens like you can get in supermarkets. I’ve only had a few major flashbacks where I’ve found it hard to differentiate between being back in that time and where I am now, but I get a lot of times where the intrusive memories in my head won’t be blocked out by anything else. It’s like a video reel of some of the shittest points of my life with extra freaky crap thrown in for good measure from the vaults of my imagination at times. It gives me issues with sleeping when it’s happening at night and I have no distractions around me. I’ve lay on my bed absolutely frozen by it plenty of times.
6) How would you describe bipolar disorder for someone who has no experience of it?
People are confused and uncertain about bipolar. It's often used as a joking term and I find it incredibly derogatory when it’s used out of context for humour. In truth, it’s quite a disabling thing to have. Essentially, if you imagine a straight line with poles at either end marked depression and mania, most people land roughly in the middle or can slide towards the depression end. With bipolar, you get really quite intense depressions which a lot of people misunderstand as simply being sad but actually also comes with physical symptoms, lack of sleep, headaches, body aches, unable to move at a normal speed because you are slowed down. It feels like a fog or wading through treacle and the world seems to lack colour. Then you can also swing to the manic end which is very misunderstood because people think it must be funny to be hyper and happy all the time. In truth, it can feel like fun at first, you are completely euphoric and everything feels amazing, you move and zip through day-to-day life, but it’s also incredibly destructive. You have poor judgement, can do impulsive things that get you into trouble, you can think you are invincible and can do anything but are paranoid and suspicious. Eventually it can become quite frightening which is where I got to in 2017 prior to my first hospital spell. Just to complicate matters, you can have mixed episodes where you can swing between the two, so for example, be euphorically happy but extremely irritable and agitated.
I think the main thing to know is that being bipolar does not equal being dangerous. The stats show only one in ten aggressive crimes are committed by someone directly influenced by mental illness, and that somebody with mental illness is more at risk of being a victim of this.
7) For you, what is it like to live with bipolar?
OK, I get periods as described above. Because I want this interview to be completely unfiltered, I will admit during my depression I’ve overdosed more than once with one suicide attempt landing me in hospital with dangerously deranged bloods. I was seen by intensive care in case I was bleeding internally or needed dialysis for my kidneys. Thank heavens I avoided either, but whilst in hospital for that I also tied a ligature around my neck and attempted to strangle myself. Again, I was rescued from this. I’ve had one inpatient stay and one spell as a day patient though both were voluntary. Thankfully I've never been sectioned, although I’ve been assessed for it on more than one occasion. It frequently leads to periods of regular self-injury as well. That’s the severity my depression can reach. I’ve had manic episodes where I got myself into debt because of my spending, I've been very irritable with my family and scared my kids. I ended up in my own A and E department where I worked, in a psychotic state and found myself head butting walls completely convinced I was fine and it was a conspiracy by my work and my friends to want to see me miserable when I was actually completely able to go to work and be in charge of the department. I was seeing a demon face in the sofa cushion in the room I was in and having auditory and tactile hallucinations. For me, it was mortifying to have to go back to work after my colleagues seeing that. I don’t think my career ever really recovered and I was medically pensioned a couple of years afterwards. To my never-ending guilt, I also kissed somebody else when I went out drinking. I am now teetotal by choice as drinking is destructive for me. My husband forgave me for what happened but it still happened and I still feel bad about it. The time I spent hospitalised caused trauma to my kids and they now cope very poorly with either me or my husband being in hospital, especially me. Nowadays, I’m on the correct medication and have been free from hospitalisation and stable for two years. However, day-to-day I’m never in the centre of the two poles, I’m always a bit high or low but I’ve learned to deal with that and recognise when I swing too far either way and need to get help. I’ve learned to self-manage with skills I’ve gained from psychology.
8) What traits of borderline personality disorder do you live with and how do they impact your life?
This one is tricky. I’m never really certain because some can be related to autism. I can be quite impulsive. I’ve brought home extra pets more than once which is why we now have two cats when I went to collect one. But it’s also gotten me in trouble with things like spending money, often on the things I’ve taken a special interest in. I suffer problems with social relationships, I can be either very intense or very aloof. I never mean to be either I just seem to be seen that way or be that way. I’m working on it. I struggle with understanding who I am as I have a habit of mimicking others and a lot of who I am is tied up in my relationships to others, so I’m a mum, a wife etc but I struggle to know who I actually am underneath these things. I have a habit of having an intense interest in something, like spending a lot of money, sometimes to the exclusion of any other thing. When it changes I can be left with projects I have no interest in doing but can be stuck with. I do also have some problems with anger that I repress which can lead to self-harming episodes. Generally, I try to hide it so I seem to be a very laid back person who tries to blend in. I can be perceived as odd however, and when I explode I very much do explode. I’ve often thrown things, damaged things or been somewhat verbally aggressive. It’s a direct result of trying to internalise my anger. This means I often take it out on myself hence the self-injury. I’m quite scared of being abandoned as I feel like a burden to friends and family which can make me intensely anxious. Lastly, I zone out a lot. A bit like dissociation. It’s a bugger when it happens and somebody is speaking to me. I have to guess what we are talking about so I don’t seem rude.
9) When you speak to someone about any of your diagnoses, how do you hope they react?
Mainly with understanding, and more so with a willingness to learn and allow me to be open about it. I am completely open about my diagnoses as I’m an advocate for making it normalised and understood with no stigma. I don’t want people to treat me differently. I’m very prone to over analysing and believing the worst so just being reassuring helps.
10) Did your recent diagnosis of autism come as a shock to you or were you expecting it?
I was expecting it. I’ve always known I feel different and don’t always act or behave the way people expect. I also did a lot of research while my daughter was in the process of being diagnosed, which took three years. In that time I recognised so much of what I’d learned that chimed with who I am and how I behave that I would have been more surprised if I wasn’t diagnosed.
11) Is there anything that others can do to support you with regards to your autism?
Don’t be surprised if I don’t look at you while we are talking. Feel free to check I’m listening though, I will often reassure you I am, but understand that whilst I’ve learned to look at people’s shoulders when I’m chatting, my gaze can often roam around the room as it’s easier to concentrate on your words that way than feeling like you are staring at me and seeing inside me because I have to look at your eyes. Also, don’t feel the need to comment or judge me on my quirks. Yes, I fidget A LOT because I find the tactile sensations of my clothes difficult to bear and I have to eat my food a certain way. Just accept it as part and parcel of who I am. Don’t be surprised if I’m socially awkward and certainly don’t expect me to manage social occasions with large gatherings. I would hardly ever attend work social nights and I hate weddings because of the need to have to do the mingle and chat thing with lots of people. Understand that I manage better in small groups. And understand I have a habit of rabbiting on and on about my special interest of the moment. Feel free to change the subject but be aware I usually need to end the portion of conversation I’m on or I can keep repeating myself or going back to it because I just HAVE to get out what’s on my mind. Understand I don’t like things sprung on me suddenly. I actually am not keen on surprise visits or not knowing what will happen on a social occasion, so I can be quite persistent in wanting to know what time we are meeting.
12) You mentioned you have experiences with self-harm; can you tell me what goes through your mind when this happens?
In all honesty, I prefer the term self-injury but often fall into the habit of calling it self-harm because that’s the colloquial term. Essentially, I prefer to differentiate because lots of people self-harm without realising it by smoking, or drinking too much, or binge eating. Self-injury is my issue, I physically hurt myself to deal with my emotions. Sometimes I find talking about it triggering but I am OK today as I’m in control of it. There’s a couple of triggers for me. Stress and upset can cause it. I feel like the anger, stress or upset is filling my chest and I can’t breathe, I can get a breath in but not out, so the pressure just builds up and up. When I self-harm it’s like a release valve is turned and I can let all the hot breath inside my chest out and the next breath I take is clear and cool. I also do it when I’m angry or in emotional pain. It’s easier for me to feel physical pain than mental so I transfer the pain to my body where I can see it. Somehow being able to see it can be validating that I’m in pain and people can see I’m in pain and not deny or ignore it.
It’s also directly caused by depression because either I hate myself and feel I should harm myself because I’m a bad person or because I’m numb- the pain might hurt but at least I’m feeling SOMETHING. Once the urge gets in, it takes over and sometimes it's all I can think about and becomes an inevitability. I’m fighting it so hard at the moment though because my kids are old enough to notice and ask questions about cuts, friction burns or bruising, and I don’t want to break their hearts. I know they will eventually figure it out or I will have to explain my scars and the thought of hurting them breaks my heart. I’m nearly three months free of self-harm at the moment and although, to be honest, the need is always there in the background, I’ve got a much better grip on it.
13) Do you think people sometimes have misconceptions about the reasons for why people resort to self-injuring?
Definitely. People think it’s for attention. Actually, most people are pretty secretive about it and rather than wanting attention will avoid medical services where they can. I’ve left cuts that need stitching open because of not wanting to go to the hospital and be treated like something is abnormal with me. I am actually very open about the fact I self-injure, that’s not about attention but about me advocating, wanting to make talking about it a normal thing so it’s not treated like a dirty, shameful, guilty secret and the stigma is gone. I also think people think it’s about trying to end your life and it’s not. In fact, whilst sometimes it’s triggered by depression so bad you want to die, it’s also a way of avoiding it by channeling those feelings, like I’ve said, into physical pain. People have a perception that it’s a thing teenagers do, especially teen girls. I’m 40 and it still happens. Be gentle with the kids.
14) Do you have any coping mechanisms you turn to, to help you through a difficult mental health day?
I’ve tried the usual suggestions like an elastic band which did nothing, or holding ice (which bizarrely made me irrationally angry and I threw it on the floor), and they don’t personally help me. I find one good way is to draw on my arms in thick red marker pen. I press quite hard and make a lot of red lines. Scrubbing it off in a hot shower also alleviates the sensation. I also use the butterfly project and ask people I care about to draw them on me. The concept is that by not self-injuring you nurture the butterfly and if you can avoid self-harming until it fades away or is washed off you have freed it and can have another one drawn on. If you die you kill it. That part of the concept I don’t agree with as it’s guilt inducing and I prefer to think of it as metamorphosis and a chance to start again with the next butterfly re-emerging from a pupa. It’s all about celebrating your wins no matter how small. You can draw your own butterflies but I find the ones drawn by people I love much more powerful. If I ask someone it’s a sign of my affection and trust for them.
I also use distraction and redirecting it immensely helpful. For years I clammed up about everything and it caused my loved ones lots of worry, and me left me with poor coping mechanisms. Now I write and perform poetry and prose and I am very into photography. Having left nursing, I’m now trying to make a go of running a business doing the very two things I love professionally. I’ve got a shop selling my photographic prints and I do photo shoots. I also offer content writing services and I’ve published one children’s book about feeling sad. I am working on a novel as well as having more kids books in the pipeline. I don’t do well with boredom so keeping busy redirects my energy.
15) If someone reading this today has just been diagnosed with bipolar disorder, what would you like to say to them?
Don’t expect stability overnight. It took me two and a half years from diagnosis to achieve proper stability, but don’t be discouraged. The best thing you can do is listen to your mental health team and be open to their suggestions. Believe that you will get there and if someone you trust expresses concern, try not to brush it off if you have the ability. They are often a good judge of when things are going wrong and are objective when you aren’t. Learn to understand your symptoms and tolerance limits so you understand when things have gone beyond your ability to self-manage and you need to reach out. Take your meds faithfully and if you get urges to stop, it’s time to reach out. And reach out. That’s what services are there for. Don’t be afraid of admitting your diagnosis. I challenge the status quo by talking about it so people can understand it. You don’t have to go fully public if you don’t want to but let the people you love into your trust. Be prepared for the worst but enjoy the best. Bipolar isn’t all bad. I think it teaches empathy. Talk to someone else who has been diagnosed longer than you. I had a friend whose dad had been diagnosed as bipolar for a long time and she kept encouraging me that it would get easier. And it did. Thank you Nik, not just for being my work wingman but for keeping me hopeful until I got there.
16) What OCD tendencies do you live with?
Minor irritations mostly. I have to have things in straight lines or right angles. I often will rearrange the table in Costa to my liking which means moving friends’ phones etc. I like all my stuff lined up the same way. I cannot concentrate on anything until it's done. I have a habit of counting in my head for my steps in a pattern of four or eight. I only like certain numbers. 2, 4, 8 and any multiples of 5. It makes me intensely uncomfortable if I have to deal with things that come in other numbers and I will go out of my way to avoid it. I eat my food in a specific order with an equal amount of food either side of my mouth, so if I’m left with a single crisp for example, it has to be broken in half. I don’t like my food to mix so I eat one bit at a time. If I have something like a sausage sandwich I wait until the butter has melted, then deconstruct it to eat the sausages first and bread last. My kids tease me about it but are also quite accepting of my quirks. With those quirks, it’s hard to tell where OCD ends and autism begins though. I’m convinced if I don’t look in on my kids at night they will die and if I’m being driven somewhere I have to knock twice on the rear window as they drive off or the car will crash on the way home. I do get convinced someone will get harmed and it will be my fault. I have various things I have to do to combat those thoughts. I can’t touch something with my left hand without trying to touch something with my right hand otherwise my body is out of alignment and I can’t focus until I’ve evened it up. The same goes with my feet on uneven bits of the ground under me or anything that knocks my arms or legs. Driving at night I have to look over my shoulder every 30 seconds or so in case anybody is in the back, even though I check the back before I drive off. I don’t drive unsafely, it’s just looking over my shoulder like you would when checking your blind spot but very regularly, and my peripheral vision takes in the back of the car while I look at the road. I avoid driving at night if I can. I also draw shapes on my hands, knees, fingers and the inside of my mouth with my tongue. Though, to be honest, I think that last one is an autistic stim not an OCDism. In all honesty, I said minor but it is pretty tiring at times trying to function with all that plus bipolar and PTSD going through your head.
17) What challenges do you face due to living with anxiety?
Talking to people. Nursing was different, the uniform was like a suit of armour and allowed me to play a part. Outside of work I was and am a very different animal. I rarely socialised in the groups. I avoid a lot of social functions unless they are in small groups and even that’s hit and miss. I convince myself people don’t like me. I over analyse every single conversation, text message, look or social interaction. Late responses drive me bananas even though I logically can work the reasons out. I apologise for everything. I make contingency plans for awful things happening because I’m always sure they will. Then I worry I won’t deal with it correctly. I think I’m going to fail at new tasks and have to work hard to overcome that mindset that I’m useless and other people are far better. Reassurance is important to me as I have very little faith in myself, and even then I will be convinced you are just being kind rather than accurate. I’m totally convinced I’m going to screw my kids up and I’m unfit to raise them. I’m not sure if that’s anxiety or just motherhood to be honest!! Essentially, I’m one big neurose who doesn’t like social contact or people much.
18) Would you say any of your mental health diagnoses/issues link together in any way?
Most of them. The borderline personality and OCD definitely mesh with the autism. I’ve been told the PTSD trauma probably triggered my bipolar (as well as my fibromyalgia). The anxiety is like the bow that ties the whole package together.
19) How would you feel if someone was to ask you about your mental health diagnoses in conversation? Would it make you uncomfortable? Would you prefer they asked questions?
I prefer people to ask. If I disclose my bipolar or self-harm I’m often convinced they are uncomfortable so I’m worried before they even show a reaction. Questions I can deal with, they demystify it. I think bringing my mental health up has to depend on the context. If you seem to be prodding me, being rude or making implications, it makes me very pissy. That's inappropriate, but acknowledging it and asking respectful questions is absolutely no problem and I will share most things if it educates people.
20) How do you feel about answering all of these personal questions today?
Honestly, I don’t mind. I had a moment of clarity a few years ago when I realised all this stuff felt like a dirty little secret. I was fed up of guilt and shame and hiding who I was. So I sat one night and wrote a long post on Facebook about the fact I self-harm and what self-harm is about and what it’s like. I’ve never looked back. I don’t want to bang on about it to the point of boredom but I do think it’s essential to advocate for conversations around these subjects, reduce the stigma, increase understanding and make life easier for all concerned. Thanks for asking me things in such a thoughtful way and well done on this project.
Thank you so much Annalisa for taking the time to answer such personal questions so informatively and openly today, you're helping to raise much more awareness through sharing your experiences. Look after you, you're important, and I can't wait to share a poetry room with you again soon and hear some of your brilliant words.
You can find Annalisa's creative work via these links:
Instagram: www.instagram.com /the_beanie_bard
Book 'The Sky Painter' available on Amazon
Open to blogging, writing content or photography services for businesses. Personalised writing and people/pet photo shoots. Prices on website.
Annalisa has recently published a three part blog on self-injury which you can find here:
If you're reading this today and you are struggling with your own mental health in any way at all, please REACH OUT! There is help out there for you and you are worth helping. Speak to someone you trust, see a doctor, or go to the 'support' page on this website where you'll find a list of useful contacts.
For support or information about self-harm, you can follow these links ...