Actually no, I’m not “fine”

So, hey there.

Been quite a while since I’ve written here, and honestly, it’s that I haven’t really had the motivation to write, not that I’ve had nothing to write about. Living with chronic illness and various mental illnesses means that a lot of the time I struggle with my energy levels and in addition, my motivation isn’t always the greatest. There’s a stigmatising stereotype around this sort of thing, that because of the sheer amount of energy that it takes to just get through the day, to attempt to challenge the what can be all consuming negative thoughts, about not being good enough, coping (sometimes barely) with anxiety, and everything like that, because it leaves me absolutely exhausted a lot of the time, there’s a lot of people that haven’t got the experience of having a mental illness and all the delights that come with it, or without the willingness to show empathy, that call me and those in similar positions, things like “lazy” or “just a dosser” , when actually I’m not like that at all.

There’s an incredible amount of myths and stigma around mental illness which is shameful really, because those of us that live with mental illness aren’t really that different to those of us without it. We all have mental health, some of us with great mental health, some fair to middling, and others frankly speaking, terrible mental health, and then there’s a fair chunk of us that fluctuate from having terrible mental health to good, to middling and round again. The point remains, here that, we are all human beings and mental illness isn’t an exclusive club, or contagious or confined to one set of individuals. It can happen to anyone. Just because it isn’t visible in the ways you’re used to, as in broken bones, asthma attacks, that kind of ill health, doesn’t mean someone you know isn’t struggling or hasn’t before. Mental illness has physical onset symptoms too – I’ve had anxiety attacks that have all been different experiences, you know the fight, flight, freeze classics. For me it just presents as becoming more quiet, not talking much, I physically cannot move from where I am (in the ‘freeze’ attacks), I get palpitations, for the flight ones the only thing that’s helped is to sprint round the block or disappear from the situation I’m in (usually for me I depersonalise and dissociate), I come out in a cold sweat, sometimes I’ll get a headache. Never once have I had an anxiety attack or panic attack that ‘looks’ like the ones you always see in films or on TV where people are screaming or going ‘ohmygodohmygod’ , that’s never been me. So, soon, there’s going to be a video that I’m going to do about this unfortunate stereotype, and basically, how we aren’t all “the same”.

A path, framed by leafy trees

So, on to the title ‘topic’, as it were, then. It’s a bit of an automatic door situation, this “I’m fine” scenario, isn’t it? We say it when we don’t really mean it, a bit like automatic doors open whenever somebody or something gets within a certain distance, even if that something doesn’t want to go through the door itself, the door will still open anyway. It’s strange really, because whenever someone else asks us “how are you?”, it’s almost always the standard response. Me personally, I’ve almost always said “I’m fine” as a blatant, cover-up, lie in response to someone else asking me how I am. By that, I mean, because mental illness is relatively invisible (unless I walk around with something stating that I have X illness – though I do actually own a shirt that says ‘My Anxiety is Lying to Me’), you wouldn’t know that I, or indeed anyone else had one, unless we ourselves told you – that information is ours and ours alone (unless for safeguarding and therefore this should in theory be for our own safety) to share with you. I’ve felt the almost ‘guilt’ of letting others in, and felt like I burdened them with what was going on – the pain of self stigma. I’ve felt that I’ve had to cover up the sheer frustration, anxiety and on-edgeness, flashbacks, the not always explainable crushing sadness, numbness and not knowing what I’m even feeling, or even just that I’m not myself and haven’t got the energy for questions. Maybe the question we get asked should change from “how are you?” to “how’re you feeling?”. I know one thing though, that I do believe we should all do. Whatever question it is we should ask it not once, but twice.

For me, it is important, and essential that all of us that can, continue to talk about our mental illnesses and almost more important is that we talk about our experience of being discriminated against and stigmatised for something that is not actually our fault, not something to be ashamed of or shamed for, and is (apologies for the shouty bit) AN ILLNESS! Not made up, or “just” anything, mental illness is illness. It doesn’t discriminate against anyone – anyone can become mentally unwell, and it isn’t about being more or less ill than someone else. It’s not a competition (and honestly if it was, who the hell would want to win?), and by making it “competitive suffering” within the mental health lived experience community, it just creates a horrid toxic feeling of being invalidated, exclusion, maybe trying to become more ill to “fit”, rejection by peers, feeling that you aren’t good enough for others. Isn’t it bad enough that we are all living with diagnosed and undiagnosed mental illnesses is it not, that we need to attack each other and make each other feel worse? Apparently it isn’t for a few – I have witnessed this in a few places online, and it isn’t healthy, it’s toxic, our illnesses hurt us all differently and though (this always annoys me so buckle up) depression and anxiety are seen as the “less severe” or “more understood” mental health issues… They really honestly are not. It’s a sweeping horrible generalised point that gets made by way too many different types of people and groups, that these two types of mental illness aren’t as stigmatised or as serious as the likes of PTSD for example. I’ll start a new paragraph for the actual point here 😂.

So the thing about anxiety (I’ll get to depression in a min) is that not everyone’s anxiety will manifest in the same way, as in their symptoms will vary (some fairly widely), there’s types of anxiety associated with phobias, and anxiety can seriously affect the quality of someone’s life. It’s not just getting a bit scared before a test or panic because you can’t find your keys – it’s more than that. For me, with my social anxiety and generalised anxiety disorder (by the way it’s a 0 of 10 on TripAdvisor for that pair…would not stay again 😅😂) , it’s the constant feeling that I’ve upset someone or I’ve done something bad even though rationally I know that I haven’t done anything wrong, the feeling on edge when I’m waiting for someone to message me back about something – if for example someone forgets (and this rarely happens thanks to a rare occasion where CBT actually worked) to text me back if they’re late to meet me, my thoughts jump to the worst case scenario, known as catastrophising – for example “they must be dead/in an accident”. Sounds extreme, but that’s what happens. I have perfectionistic traits too, where I often think I’m not good enough for someone, that my work is rubbish, stuff like that. Other anxiety things include fun things like struggling to accept compliments, low self-esteem, skin picking on my fingers, being irritable, tired because of the often anticipatory anxiety. Social anxiety has to be perfectly honest, been an ongoing wrestle for me. I’ve struggled with eye contact my entire life (not all due to social anxiety though), I have an intense dislike of being the centre of attention, hate public speaking (considerably more so when it’s in front of friends or people I know), I rehearse what I’m going to say before I order at restaurants and fast food places, and problems I’ve had include: fear of sitting on the inside seat on public transport (fear of being trapped), going into and paying at shops and making ‘small talk’ with the cashier, basically I’m terrified of being judged, messing up and looking like an idiot, though I do know it’s unlikely, but it’s hard to move past irrational thoughts when you have the past I’ve had. I have got better at this but things don’t move too quickly all the time…and they don’t always need to.

Now onto depression, and the so called black dog. I’ve had this a few times in my 27 and a bit years on this planet now and I know at some point I’ll inevitably face it down again…but at least I know what’s coming. For me depression can be really serious. To throw into the mix here that I’ve also had seasonal affective disorder (SAD) for approximately 8 years now which mirrors a lot of my anxiety and depression symptoms but only runs from mid October to early February..can set my watch by it. I think I’ve had mostly reactive, or situational depression, and I’ve been someone who’s looked after pretty much everyone around her before themselves…sigh. I know I’m becoming unwell with depression when I start to get ridiculous with my self deprecation… I mean, I poke fun at myself because I think we all do, but when it gets to the point where I’m literally being so harsh on myself then that’s a red flag…oookay back to symptoms… Other things that show up when I’m not well depression wise are being unable to focus ..on anything. Not even colouring. Feeling “stuck” and being unable to see a way out or an upside to things like I can usually do. The negative thoughts (which are always there no matter my mood, mental health status or whatever) start to get more persistent, intrusive and “louder”. Getting triple the anxiety to my “normal” anxiety (which again is probably waaay higher than your average ‘well’ person’s anxiety level). Becoming really indecisive, or taking on more than I can manage, that usually I’d be sensible enough to say, actually I can’t do this at the min. I get quite moody and sometimes aggressive which is out of character for me really so all of those are red flags. Once I start to lose hope, that’s the main sign that things aren’t going too well and I need to just stop and think before it all gets too overwhelming. Another distinctive symptom is the feeling of heaviness, like I can’t move or breathe properly, that’s when I know depression has arrived, with its energy sapping ways. It takes everything I have to stay afloat and not get dragged into the abyss, so to speak. Some days are good just because I make it downstairs, or outside.

So from my experience, depression and anxiety can both be incredibly serious. Anxiety caused me to become suicidal last year and then experience depression from the back of it. So without being condescending, I’d say anxiety is serious. When my anxiety was at its height and before I was treated with medication, I couldn’t go more than 3 or 4 days without at least 2 panic attacks, I was on edge all the time, I didn’t want to eat, my sleeping pattern was horrendous, concentration non existent, I spent the days covered in sweat and paranoid that someone would find me out to be weak or something. I was afraid of my own shadow, never able to stop looking over my shoulder or rest. My energy levels were awful and I ran on adrenaline a lot of the time, trying to hide the truth, that I was not okay. When I was first given medication for anxiety, it was life changing (what a cliché!) and I was able to function again. This is purely my own experience and each of us need different things to function and work differently, like car engines and boilers. I know and have come to terms with the fact that I’ll likely be on meds for life and I’m alright with that, because that’s what I have to do to stay well enough to function and live.

I used to be ashamed of having mental illnesses, and got used to hiding that part of my life away, hiding behind humour and random excuses. But when I came across Time to Change and more importantly my local arm, Time to Change York, and what they stood for, I realised that, actually I didn’t need to anymore, that other people had “the thing” that I had. I can still remember it, around 2 years ago now, and I nearly backed out of the initial meeting because of social anxiety, the familiar fear of being judged all over again. Things changed for me that day and I regret absolutely nothing. Being able to be myself and giving myself that permission to be like “hey these guys aren’t so bad, they get it, you can talk to them about your experience of living with mental illness and not get the ‘judgemental face’, it’s ok” …it was just brilliant. I’ve got fulfilment from being a volunteer Champion , more so than any paid job I’ve ever had (additionally more straight talking!)…and a lot less BS too! So, 2 years down the line, and though the world has changed, I’ve done a lot of Time to Change York stuff and had loads of opportunities just because of my involvement…and as happy side effects, more confidence and maybe a teensy bit more self esteem, and two really important other things – self advocacy, the ability to know when to step away and the ability to seek/ask for help, and being able to be honest and authentic with myself and others. The latter are qualities I value highly, those of you that know me will already be aware of, and the former are skills that were so important to me as I developed complex PTSD symptoms… Terrifying for me but because I knew what to do and where to go for help, I might well have saved my own life by getting treatment early (flashbacks and hypervigilance are like riding a bike that’s on fire) – I did have to go private because of the situation and I am aware that is a privilege so I don’t boast about it but that’s why I push for change and equity in mental healthcare – it is utter lack of responsibility and resource that the government have repeatedly across many years neglected the services which consequently are now overwhelmed. Obviously there are stigma issues within services too which don’t exactly help. But this voluntary work has been and continues to be good for me, and it was through this I got the nudge I probably needed to tackle the social anxiety pimple.

All that said, social anxiety has been a constant thorn in my side since I was a child.. certainly from what I remember anyway. I worked really hard to really get on top of and manage it, and thought I could control it. Spoiler alert – it isn’t.

On the surface, you’d never know I have social anxiety. No one else can see the sheer terror I feel in the lead up to social events, the minutes before the Zoom switches on, the reasons behind my silence in meetings. My eye contact isn’t great, I kind of want to fill the silence because I can’t stand the awkwardness, but at the same time I feel I’m interrupting someone else, my mouth goes dry and I start to sweat. I’m scared of being judged for messing up things I say, that one of my abusers will pop up and do something to me to humiliate me (irrational I know but there’s historic trauma). I thought I had control, and the thing about control and anxiety (and mental illness) is that, well for me anyway, when I feel that I don’t have any control over something that I should have a degree of control over, then I can spiral in terms of being anxious and mood fluctuations and just generally getting unwell. Once I have an acceptance over something that I know is out of my control, I cope so much better. My social anxiety has taken many “forms” over the past months, within the pandemic times, and it has popped up with a vengeance recently, because I have an ongoing uncertainty…. Moving house for the first time in my life. It’s sapping my energy and the anxiety has gone up a gear.

So, I’ve gone back to counselling. I’ve gone private to talking therapy and I’ve been going there for about 3 months now. I’ve worked through a lot of stuff so far, ranging from coming out as bi, to the decade of bullying that I’ve never really spoken about and a bunch of stuff related to it, anxiety and all the emotional abuse stuff. It was important to me to find a counsellor that I could trust and build a rapport with, because I’ve had so many trust issues to date and for the first time, through all the therapies and counsellors I’ve used, it’s the first time I felt that things are actually working and that the rapport is brilliant. I made a commitment to myself when I decided to go back to counselling and that was around wanting to get and keep myself well, stay alive, learn how to cope and working through things that avoiding talking about hadn’t worked for and actually cope with the past. I’d become really closed off for a while and that just wasn’t me, and had I continued being that way, I was basically a sealed time bomb, waiting for another breakdown. The word recovery is a bit of a strong one for me, I prefer to say healing, if I’m honest. I don’t think I’ll ever be ‘recovered’ completely from anxiety, or complex PTSD, but I can heal and learn to manage the bad days and enjoy the good ones.

So this has been a rather long post, at least for me it has 😅. One thing though, that I have learned, is that communication and clear boundaries are really important. Up until I did this voluntary work, I didn’t know how to make boundaries or use them, and I used to blame myself for it. But I know, truthfully, that it was my abuser that should have known better. I appreciate the people in my life right now, that set those personal and professional lines. As someone with complex PTSD and anxiety who is also neurodiverse, I need those clear lines to help me. I never intend to upset or hurt anyone intentionally, it’s just sometimes I need a guide because when I should have been shown how to protect myself, instead I was ignored.

Until the next post (and as always, comments, questions etc welcome, I am @lozzzknight on Twitter so you can also follow me on there) it’s bye from me 🤍💚


One thought on “Actually no, I’m not “fine”

  1. A beautifully articulated, heartfelt and important message, thank you for sharing your experiences. Every time I read an account of the intensely personal, individual nature of symptoms of Anxiety I gain more empathic understanding.
    In particular you describe the competitive aspect of mental health awareness that belittles certain diagnosis. In my experience this has isolated those who are struggling to live with their symptoms in fear off being stigmatised as ‘other’. Loving friendships, family members can be just as insensitive to the levels of “wellness” surrounding diagnosis.
    When my daughter died by suicide in 2015 at 32 yrs old there were many who voiced their surprise and devastation at her death. “ ‘Bubbly Sam’ how could this be?” “She was always smiling” “I told her it was time to beat this mental illness and get back to work” or “I didn’t know she was THAT depressed” all people who knew of her previous attempt four years earlier, subsequent diagnosis and struggle to stabilise her symptoms. It was as though they chose to be ignorant to Sam’s diagnosis. Yes, she masked to those she didn’t feel comfortable sharing with but these were people she had been open with (which had taken energy and strength) and they still didn’t “get it” as Sam would tell me when describing why she often ‘smiled through’ her anxiety.
    I had to do soul searching work on myself to be compassionate to those who expressed these sentiments and 6 years on after feel that we all have limited knowledge of the reality of Anxiety and the spiral of intrusive thoughts. So thank you for being able to share your experience, which in turn contributes to greater understanding and awareness.
    Sending my love and gratitude to you,
    Carolyn 🙏💕


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