Mapping the intangible

Content note: Very detailed talk of suicide and self harm, rape, disordered eating

I’m sat on my sofa, exhausted and in a lot of pain after a night of restless sleeplessness, trying to get in the frame of mind to allow me to explain how my head works. Not my actual head, of course, but rather the jumbled basket of emotions, thoughts, moods,  and reactions that I have day on day, year on year. The things that make up who I am, or perhaps that mask who I am. They’re ever changing and splinter off in different ways, making odd connections where you wouldn’t think one could arise, or seem inexplicable but are linked nevertheless.

For a long time now I’ve been wanting to try and get some record of or try to find a way to explain how my moods, thoughts, and emotions have impacted me, perhaps take stock of the turbulence and upheaval that have an enormous presence in my life. If I can get it out of my head and into something that doesn’t completely escape description, even if it’s just a fraction of it, it can surely only help. The more I learn about myself and how to express precise moods, emotions, trains of thought, the less I seem able to do so. A quest for a precise description of self-analysis has led to over-analysis, and employing techniques of mindfulness in recent years have only escalated this. Recently I’ve gone back to seeing someone who’s helped me a lot in the past and I’ve been asked to try and think about or maybe write about what’s going on with me. I know something is wrong but I don’t even know where to begin in expressing it, the sheer scope of it baffles me. Where do I even begin?

I’ve had mental health problems dating back to my childhood, low moods, high moods, anxiety, irrational anger, impulsiveness, obsessive and disturbing thoughts that don’t feel like my own.  I don’t really know what qualifies as who I am any more and I’m not sure that I ever have or will. How do you find the line between personality developed from lived experiences and moods, emotions, entire ways of thinking that are constantly destructive, intrusive, or otherwise harmful, colouring almost every period of your life in different ways? Is there a line between them or is it something I have to accept as being part and parcel of my personality? No matter what it’s becoming eminently clear that the two are always going to be intrinsically linked. While a line may one day make itself clear, my experiences have been impacted by the moods I had at the time, my responses to situations have been clouded by them, my reason differs with each leading to an outcome that may otherwise not have been. It’s woven into the minuscule bits of context that have made up who I am.

I often wonder what I’d be like without it. If you took away the constant whizzing, clouded, grey, itchy, or loud thoughts that circle my head. If you stole away the feelings of greatness, elation, and joy in times of great pain and sorrow, or unworthiness, shame, and wanting to die when life around me was actually better than it had ever been, how different would I be? Would those experiences have led me to be a different or better person? I’ve always had a passion for learning but struggled with it desperately, always unable to focus or absorb information under what felt like immense pressure and inevitable failure. Would I have been able to cope in structured education? Could I have managed with my physical problems better and made something of my life instead of just desperately trying to keep myself from drowning?

Around this time last year I had come off the antidepressants that had been prescribed a few years earlier, finding that while they were successfully dampening the highs and lows I formerly had, making the transitions between them slower, it seemed as though everything had been slanted towards the lows. For the previous few years I had barely done much at all, my thoughts were still switching between a chaotic and distressing buzz and sluggish enveloping cloud. It was as though I was stuck in a loop of frantic self-loathing, an almost calm sombreness, and acceptance of eternal worthlessness, all the while battling to be better. Something about the feelings made them harder to remember, hazy, I couldn’t think back and place how I felt or associate things with moods and any swings that I had. When I try to think back it’s just this grey fog and a vague understanding of what lies beneath it.

I was sick of feeling stunted and began romanticising what it was all like in the past. My moods and the thoughts and emotions they influenced were so incredibly vivid, in my mind they’re like bright or dark colours, solid or beautifully mingled images that are easy to picture and associate with seasons, music, art, activities, colours, memories of feelings and even smells. In my head I cherry picked the times I had channelled the pain into writing or began to see lows as this struggle that bettered me in the end, after all I got through it didn’t I? It’s better than not feeling things so clearly, surely? Also the times that my elation, this almost palatable high and focus channelled so beautifully into art. Days upon days of not sleeping, just focused on getting everything perfect, hour after hour of creation and achievement. I couldn’t go wrong and oh God the happiness that came with it, what was almost a brightness, a light. Yellows and oranges and sunlight, warmth, freedom. I convinced myself I was holding myself back, like my feelings were being trodden down and told to shut up and what it left just made it seem like everything I was going through wasn’t worth it, not least with the addition of the sexual dysfunction that accompanies most antidepressants, I just wanted to feel something again. I wanted Me back. Or should I say the Me that nostalgia had invented after a few years had allowed me to forget it didn’t exist.

I refused to acknowledge the constant battle against the allure of a razors edge or seeking solace in the bottom of a bottle. I forgot how the elation gave way to anger as the need for perfection leaned towards frustration, taking every interruption or expectation to participate in the world outside of my own little world as a hindrance to the important thing I was presently a part of. The desire to escape and explore everything, to want an altered state of mind and new experiences and a different life. I wanted to create, and feel, and suffer, and live. I wanted the purpose I was sure I once had.

Despite all of the hopes I had built up for myself, I coasted throughout last winter. Energy and emotion I wished for turned into a void instead. My thoughts were sluggish, thinking coherently was difficult as each time I was having a conversation or thought of something it’s like it stopped halfway through, like a caught fish wriggling free. It took effort, concentrating on anything became a mammoth feat. I began to hate myself again, manifesting in everything from shame over the smallest things, feeling as though every minor misstep was a failure. Patterns of negative thoughts were a constant, taking any small event and picking it apart until a conclusion was found that I was worthless. The desire to self harm was there but aside from a few particularly bad days it was more of a macabre dalliance with the thought of it rather than the act itself. There was no biting need to vent or find some kind of relief because no pressure ever built enough, it was dull, blunt, a heavy weight rather than grief and chaos.

A big part of this period was hating the body and looks I had spent so much time and effort into learning to love. Love is probably too strong a word though I had always hoped to reach that point, I’d got to more of a passive acceptance. The weight I was so pleased with putting on after years of trying began to drop off during a period of sickness and I found myself focusing on it, obsessing over it, and starting to fall into old habits of wanting to restrict my intake of food, to get smaller, thinner. The acceptance I’d achieved dissipated as it presented itself as an avenue to try and regain some control. Under the guise of trying to be more healthy, to better love myself as I kept telling myself, I began to explore different foods, reading the labels of everything I ate, using more fresh and basic ingredients trying to cut down on processed food, eat more of certain groups and cut out others. I began to feel guilty if I slipped and to make up for it I would restrict myself further. I continued shrinking and struggled to balance the desire for self acceptance and my new take on old obsessions. I’m still trying to fight the urge to measure and restrict, but the control it gives when I feel I get it right is an odd comfort when everything else feels so uncertain and beyond me.

A lot of the lows changed come March when out of nowhere I suddenly started making plans. I woke up one day and wanted to sew. Then I wanted to move the furniture around, spring clean the house. I wanted to overhaul the garden and grow vegetables and giant sunflowers again. I had ideas for art projects, paintings. I wanted to go and see friends, do things, redecorate, cut my hair. I was a force to be reckoned with and everything felt so right. I remember thinking everything was calm and orderly. I spent less time online, I started sewing projects and creating recipes, I kept a diary. It seemed like nothing could go wrong. It felt almost as if everything bad was behind me, that the future would be brighter now, that things are in order and I’m healthier and it was all going to be okay after all. The yellows and oranges and warmth were here to stay.

Though I had a crushing dread in the back of my mind as I went about things, nagging at me that I’m setting myself up for a fall, I did all I could to ignore it. It must have been there because every time someone suggested that the future would be brighter a niggling doubt arose, but I didn’t want to confront it in nay meaningful way. I tried to play off the explosive anger as justified, the constant irritability and forgetfulness or flippancy as nothing. I was frustrated by the pain that was holding me back but I felt I had so much going on that it didn’t really matter because in the grand scheme of everything I knew life would now be it wasn’t such a big thing, was it? And life was so huge, so vast with so much opportunity, so many connections to be made, ideas to have, things to do. The irritability only grew as a result of my physical limitations and wasn’t helped by the excessive quantities I drank, in part to make the pain shut up and in part because it was just there, but the connection wasn’t made until much later. I had convinced myself it wasn’t the voice of experience and reason trying to get me to stop and think but instead an attempt at self-sabotage over the Now Okay life I was sure to have. To others it was obvious I was a mess, scattered and temperamental, I had spread myself far too thin and was completely unaware. Eventually it was bound to come crashing down.

I want to point out here that what I have written so far draws on memories. Looking back and trying to pick apart the moods, the thoughts, all of it I guess. There’s probably some bias in it due to the mood that I’m currently in, it peppers everything else so I can only imagine it would also impact on my memories and ways I’m expressing things. Writing of the low I am in at the moment will contain a lot more detail, I’ll also be speaking candidly about self injury and suicide ideation.

I can’t remember the exact point it all fell apart but it was perhaps 2 months ago, and with a violent ferocity. There was a few particular days I vividly remember during the swing, hazy ones where I didn’t feel here. It was as though I had taken a step backwards, out of my body, by about an inch, and while I could think it was difficult to really get words out or even connect with what was going on around me. I couldn’t take in what people were saying properly and forgot what I was doing a lot, getting easily confused. I was very calm but completely detached. I’ve had it to lesser degrees a lot as far back as I can remember, usually happening round the more extreme parts of my mood. On the outside I’m told I looked dazed, glassy eyed and not full there, difficult to engage with. Then what started as a thread of a few negative thoughts and odd thoughts of self harm one day turned into a full scale unravelling the next. A close family death and news that my husband had to undergo testing for cancer added to the weight. I couldn’t even take stock of all the ways that life was wrong. It all suddenly all dawned on me, everything, and I had no idea what to do. I couldn’t do anything, I can’t do anything, it’s was all out of my control.

I began restricting my meals further as some kind of way of regaining a balance but each time I deem myself to fail it just adds to the weight. A spiral of shame begins and even if I try to be mindful I just end up over-analysing and finding a hundred other things that are pretty terrible or set up ready to make life worse. Thoughts have been buzzing and chaotic, not really following particular stream of consciousness but changing all the time. One thing, then another, and it leads to another but nope here’s another and oh look have more. They itch, I want to tear them out of my head as they form an almost cacophony of noise inside my skull. It’s like every time I grasp at one another come along and bumps it out of the way before I’ve had a chance to look at it. Someone I spoke to recently likened it to them being put through a washing machine.

This time the low has brought something new. Voices in my head. I’ve had them before in so many ways, particularly as a teenager but not quite in this way. These they circle around like little whispers sometimes, they feel like they belong to someone who isn’t me but I can’t quite place why they feel that way. They don’t seem to feature often but kind of pop up every now and then without cause to tell me I’m worthless and ask who would possibly love me. They bring with them emotions; shame, despair, embarrassment, worthlessness, a feeling of being undeserving of love and a burden. The emotions are usually there to some degree anyway but it heightens or changes the nature of them.

The compulsion to injure myself has been a big part of this low so far. It had been around 2 years since this was last a feature and I left three deep gaping sliced in the side of my torso with a razor blade. I don’t know why I get so transfixed on the desire to cut but it’s difficult to stop thinking about. I’ve tried to stop it by giving myself other outlets. Drawing on my arms, punching myself and pinching until I bruise or bleed, digging nails into my arm instead of picking up the razor blades. It didn’t work. The scars I left 2 years ago are to be accompanied by more as these new gashes heal, and while I hope to fight it I’m still finding it hard not to obsess of the idea of doing it again. I found the cutting like opening a pressure release valve, in a similar way to how crying hysterically about something can make you feel a relief from your sadness. It has a calming effect that makes it a tiny bit easier to cope, even if doing it in itself is a sure sign of not coping. It’s not something I find myself doing on a whim, I obsess over it to the point that it’s too much, instead of just grabbing a blade and going at it, I ready a bowl of disinfectant, gloves, a fresh blade, paper towels for the mess. Steropads and surgical tape for dressing. It’s not until afterwards that the gravity of what I’ve done sinks in. Shame, regret, loathing.

Some emotions themselves bring up memories, things I’ve done or had done to me and want to forget, they get worse… Heavy, crushing. I can’t help but feel I’m a failure and even though I’m here, understanding this is not necessarily the ‘true me’, who I am, I continue to feel that way. This is one of the few places I can definitively draw a line, I can see it’s all illogical and have this notion that my awareness of what’s going on should somehow stop it but it doesn’t make a difference. I still ultimately don’t understand the point of going on with things any more, that everyone would likely be better off without me and that this is the best I could ever hope for in life. This, forever. Endless cycles that inevitably lead to misery. One day I’m certain it’ll kill myself anyway so why don’t I just speed things along?

The first time I considered suicide as a serious option I was 14 years old. It was shortly after a period of ill health where I had been bedridden. I was very out of it and had difficulty really moving much at all because of pain. It was not long after my pain symptoms had really started to make their mark and the flare up was agonising. A man I was seeing, an adult who I met online, came to visit and watch TV with me, quickly taking advantage when we were left alone in my room. At the time I didn’t really feel I had anywhere to turn and had fallen into a darker place than I’d ever found, I had no idea how to manage my emotions at all and often wanted to lash out or scream. It was a deep pit, right in my core. Like an emptiness that I could feel. I began not taking my pills, an array of painkillers and antidepressants in high doses. I kept storing them up for months, making sure I would have more than enough for a certain demise. A moment of clarity led me to throw the entire pot away, something I later regretted but couldn’t exactly do anything about. It was known I had them and I was confronted about it at a later date, something which heavily reignited my thoughts of it.

As with then, pain is a big feature at the moment, both emotional and physical. I never got over what happened and, while I’ve had some experiences since along the same lines, it’s that one which stuck with me, that I was most ashamed of and find myself thinking back to. Pain is impossible to ignore at the best of times, it’s always there to some degree, both neuropathic pain and joint pain. Sometimes one will be worse than the other, attack different areas of my body at different times and different ways. It’s always varying from awful to wanting to curl into a foetal position and die. In moods like I’m in right now it becomes hard to balance all of the elements of my health. Dislocations seem like a big thing, I sometimes cry over them and I have no idea why; I’ve already accepted my body is useless. The constant clicks and falls, the different pains and sensations. It’s the biggest feature in my thinking about killing myself. A few months of a lot of pain and I could save up prescriptions, wait until I’m alone of a day or evening and take a shower, leave a note on the door saying not to come in and to call someone and say what’s happened. I could take them all, tear apart my wrists or thighs for good measure. I wouldn’t have to put up with it any longer. At times it’s the thought of the act that I want. I want to die but I don’t really know if I want to be dead. Others it’s a longing for a void of existence, it all just stopping and having no consciousness, no care, no nothing. A permanent deep sleep where none of it matters any more.

It’s all going to go downhill from here physically, too, both in terms of pain and mobility. While I’m already very restricted my joints will deteriorate and there’s a good chance my nervous system will go along with it. When my nervous system goes they could insert a shunt or perform exploratory surgery to try and work out what caused the problems to appear and fix it. The unfortunate thing would be the success rate of such surgeries though, and for that matter what qualifies as success; ‘it isn’t growing’.

I’ve always had this thought in my mind, a pre-plan if you will, that one day when it gets too much i’ll end it. It could be pain, it could be mobility, it could just be that it all wears me down to a point I don’t want to deal with it any more. It’s a promise of mercy when the time comes it’s right. There are caveats though, that I must be in a good place, a calm place, reasoned and logical with a firm acceptance that this is right. I’ve considered making it that I have to decide during 2 good, clear headed, calm phases. Choose it once and then agree the next time. While macabre, this isn’t an unkind or depressing thought. It’s always been a calm thought, one I’ve held and explored for a very long time. It’s one of the reasons I’ve not acted on any plans I’ve come up with, for some reason it seems like an important promise.

I find myself grieving for a future I will never be able to have. I always pictured having a career in IT, perhaps doing art on the side. Now I need morphine and taped up fingers to hold a painbrush and my fingers can sublux from typing leaving the need for voice software. This morning at around 5am I was lying in bed, wide awake. I was restless and fidgety, also deeply upset as I was thinking over what to write in this, picking apart my own mind. I wanted to get up and paint, something dark in blues and greys, cold. I nearly did as I have canvases galore as well as paints, but I remembered how hard I found the last paintings and it felt like the desire just hit a brick wall, stopped dead, gone.

I’ve lost a lot to my physical health, almost everything that I love doing is out of reach. Pumpkin carvings, paintings swimming, sewing. That grieving for my future will hopefully one day dissipate or move into grief for the past, but for now i’ll have to make do with what I’ve got, treading water and trying not to drown.

I wish I could offer some words of solace to end all of this on given the seriousness and depth of the post, some message of ‘don’t worry, I’ll be fine’ but there isn’t one. It won’t be. While perhaps one day I may get relief in some of the areas that affect me, presently looking into the mental health side of things, I’ve accepted that my future holds an inevitable decline and while I’m not okay with it I also accept that I have no choice, it’s happening whether I like it or not.

Writing this has not been easy, I’m exhausted and drained. I had seriously considered not publishing it but instead considering it an exercise in self-exploration and to assist in helping to find out what it is that’s wrong. But on the chance it helps demystify mental illness for some, helps them understand the devastating impact it can have not only on a person’s life but personality and experiences, or helps someone find comfort that they’re alone, it’s worth it.

In all it’s messy and intertwined glory, this is my head, my life, me, not me, all at once.

Please, don’t make our health your costume this Halloween

Illness is not a costume

Did I need to say that? You’d think it would be pretty obvious that to dress up as an illness many have to battle is pretty insensitive, outside the realm of what most would consider acceptable, no?

Apparently it’s not so obvious, as evidenced by a Greene King pub in Bournemouth who are soon to be hosting a Halloween theme night where people are encouraged to dress up as ‘deranged doctors, nurses, mental patients’. Edit: Greene King have stated apologise, saying it’s an unsanctioned initiative by the pub. They have cancelled the event on behalf of the venue and are sending staff on diversity training.


Thanks to stigma, something which is furthered by what some are considered to be light hearted novelty costumes  people with mental health problems are often portrayed as dangerous, scary, unpredictable, violent, prone to lashing out and even murderous. In previous years we’ve seen a vast array of them which are centred around the stereotypical ‘mental patient’, from ‘escaped mental patient’ to ‘psycho killer’.
The reality is that people with mental health problems are far, far more likely to be the victims of violent crime than they are to commit it. They are more prone to abuse, isolation, murder.

Associating mental illness to negative things is already helping shape the way that stigma towards people with mental illnesses manifests in our societies. Turning it into a joke ‘mental patient’ costume is to make real, bring to form the very real stigmas that we face and that make life harder for us.

A great example of how this view of violence permeates a culture is in the United States gun regulation debate. Every time there is a mass shooting, which sadly is many in the past few years, what’s the first thing people ask?

“What’s wrong with them? They’re obviously mental”

The NRA describe the issue as being one of sickness as do many others in the pro-gun side of things. The general line is “crazy people shouldn’t be allowed guns, stop crazy people”.
A few years ago someone in the NRA, I believe, went so far as to suggest a national register of those with mental illnesses in order to prevent future mass shootings. Oh, and of course they also used it as an opportunity to encourage people to get guns in case they come across a violent crazy person.

The association of mass shootings and mental health problems gets into a lot of people’s heads. When you’re hearing it from news stations around the world, in papers, on social media, it’s a hard association to break. It’s easier to accept that someone’s ‘out of their mind’ than capable of shooting a lot of people, but how many of those shooters have actually been found to be mentally ill? How many were motivated by something to do with a mental illness? Where are all the drives to encourage psychotherapy and prevent it from happening? Where’s the extra funding towards it?

While the US example has far more impact and has a far more sombre message, things like these costumes, novelty as they are, assist in compounding that oft heard message of ‘mental people hurt people’, every time it comes up in a TV show, in a book, it pushes it that little bit more. The stereotype is dragged out so much that a lot of people don’t even question it. A UK survey a while ago found that a third of people thought those with mental illnesses are more likely to be violent.. The more this message is broadcast and the more people who choose to listen to it, the more stigma people with mental illnesses have to deal with. The more people are scared of us, see us as crazy, see us as dangerous.

There are a lot of outfits and themes out there which don’t bring more misunderstanding and pain into the world, that don’t harm people who are already having to deal with some very heavy things. Please, use one of those. Don’t make our health your costume.

Quantifying stigma: pitting the mental against the physical

Content note: Mentions ableism, mental and physical health stigma, gaslighting, fat shaming, eating disorders, death.

Raising awareness to the prevalence and difficulties of mental illness – how commonly it touches people’s lives and the stigma people face, the hardship and stress that stigma causes – is undoubtedly a good thing. When it comes to raising awareness of anything, we find it easier to quantify it’s severity by having a mark of comparison, and with mental health stigma the comparative gauge is usually ‘how we treat physical health.’

You wouldn’t treat someone with a physical illness the same way you do mental illness

This is one of the most popular messages you see doing the rounds when it comes to trying to raise awareness of stigma that’s frequently associated with mental health. We still see metal health as something shamed, words such as ‘crazy’ and ‘mental’ are still thrown around lightly to describe people who have very serious and very real difficulties, and when you’re in the grips of ill mental health those words, those negative messages, they can hit you hard. They can compound negative messages already going around your head and to say that is unhelpful is the Mother of all understatements.

We can see the hardship that the stigma causes, we can express it and we can explain how and why it’s harmful. We can raise awareness of individual illnesses and teach people what the different terms they flippantly throw around actually mean. What many often cannot see is that the above gauge so quickly leapt to for a measure of severity gives away our ignorance of stigma in illness and disability, as well as the parallels between the mental and the physical.

To sit and read social media, blogs, and columnists for various newspapers, people decrying the things mentally ill people are forced to face by a society that doesn’t understand, while steamrolling over the very real experiences you have lived, can be extremely alienating. If you have a physical health problem, chances are you have experienced almost exactly those same messages that you are being told you would never be subjected to.

“You just need some more fresh air, get out a bit more! You’ll be better in no time”
“You need to eat better, the key to good health is making sure you have a good diet.”
“You just need to exercise more. That increases your happiness too, it’ll help you get stronger”
“You need to remove stress from your life, try and relax more.”
“Do you drink enough water? You should try and drink 3 litres a day, there’s a lot that can be fixed just by doing that!”
“You should cut gluten out of your diet. Most health problems are actually rooted in the gut.”
“You should remove caffiene from your diet, you’ll never get better poisoning yourself with that.
“You need to think positively about it. Mind over matter is really powerful. You’ll never be better if you keep being so negative”
“You should try homeopathy.”
“It’s all those drugs you’re taking, they’re making you sick.”
“You need to eat small breakfasts every day”

The list of things people tell you will cure you – if you just try hard enough, invest enough time, put enough energy in, be more positive about, spend money on, ingest this thing, cut this out – is endless and you hear it all the time. People may not necessarily mean anything by it, they just want to help you somehow and giving advice is not only the easiest way, but sometimes the only way they can do it. Realising you have a health problem is like giving up control of a huge part of your life and it can be hard for those around you to accept that things are just as they are.

Whatever the reason for giving their input, what it feels like you’re being given this sugar-coated pressure, this nagging shame, it’s put to you as though it’s in the form of Good Advice but the message behind it is always the same thing. It’s you. By doing or not doing something, not doing enough, not trying, you are the root of all your ills. The underlying message is effectively blaming them for being sick.

One way you can see that underlying message compounded or remove any doubt as to it’s presence is when you explain to someone who has given you this Good Advice that it just won’t help. You won’t get better. Fresh air is not magic. You appreciate what they’re trying to do but exercise is not a miracle. They will sometimes give other, similar advice, or they’ll begin to tell you they’re just trying to help, how do you know if you haven’t tried it? Sometimes they may get increasingly defensive as if you’ve personally insulted them. You can told you’ll never get better if you have such a bad attitude about it, and that you’re not getting better is evidence of this over time.

If you have accepted the fact that you are ill and just want to get on with your life, your illness can still be a big part of that, and there being no happy ending is something a lot of people simply cannot get their head around, and your acceptance is deemed giving up. For a lot of illnesses, the expected outcome is not necessarily a good one and false hope is crushing, but in the face of the worst odds you are expected to fight until the end. You’re not supposed to get on with your life. “Maybe you’ll be the lucky one, there must be something, just do this..”

Sugar coated blame is just one form of all this. Did you know you can sometimes have doctors telling you it’s in your head? That you’re making it up? You can be told that what’s happening to you just isn’t possible, that you’re “crazy”, that you’re imagining it, that nothing is wrong at all. You’re told you’re making up all the pain, drug seeking, even that you’re too young to be in that much pain, or ill at all, unable to walk well.

“You don’t look sick” is one of the most consistent things a lot of people with invisible illnesses get told. It’s as if your failure to fit the very mobility-focused disability chic view society has of illness, pictures of people in wheelchairs or sitting with blankets over their legs, being helped to walkers, nullifies your lived experience entirely. You can experience everything from an expectation to hear exactly how you’re sick in order to prove you are not lying to an outright denial that you’re sick, that you’re clearly faking it, you look too healthy as if that has some homogeneous visual quality.

Sometimes you’re told directly that it’s your fault, whether it’s true or not. Smokers with lung cancer or COPD are consistently reminded of the link between their health and behaviour, fat people are told every health problem under the sun is down to their weight, and you can see the parallels that arise when you see people with eating disorders told that their issue is vanity, people with depression told they’re just weak in character. Even people who are dying are routinely having it suggested that they’ve done it to themselves in some way. It can come up with bizarre and tenuous links through ignorance; told you’re being tested by god, it’s karma, blaming a use of medication in childhood for any variety of health problems, blaming a lack of breastfeeding, blaming poor diet when young, poor upbringing, bad schooling meaning you’re just not coping with what they see as “normal” health. ‘Broken’ families’, lack of a Father figure, too much TV, too much time in front of a computer, not socialising enough.

There is so much stigma around physical health and a lot of it is ignored, misunderstood, or simply tossed aside as flippant commentary you should ignore. It’s emotionally taxing and stressful, and it’s something a lot of people have to learn to manage on top of their health issues thanks to it’s prevalence in our society. You can’t ignore something that won’t ever seem to go away, not least because people so often wish to know “what you’ve done to yourself” at any hint you’re presumed to have a health problem. Over time it can drag you down and put you on edge, you start saying you’re fine a lot because then maybe, just maybe, it won’t come up. You can feel small and helpless the more you are told “you just need to..”, and over time as you’re ground down you start to doubt whether you’re really sick, whether you’re really just lazy, whether you’re really just mentally ill.

All of this is not to ignore that there are also some enormous crossovers with physical and mental health stigma. An expectation you’re depressed or otherwise mentally ill because “how on Earth can anyone go through that and not be?” The aforementioned being called ‘crazy’, imagining things, it all being in your head. If you are already diagnosed with a mental illness, it’s possible that a lot of other, unrelated, health issues get associated with it. Your lack of energy is your depression, investigation over, problem solved. Your pain is worse because you’re clearly not coping mentally, try and remove stress and just relax more. And equally mental health is ignored at times, “well of course you’re going to be stressed with all this going on” when really there is a deeper core problem that needs addressing. Let’s not forget, either, that many people who have physical health problems may also have mental illnesses. You have to navigate the stigma of not just each of them individually, but them both together as well.

Mental and physical health undoubtedly have their own individual issues attached to them, their own stigmas, and when you stand at the intersection of them both you see new ones arise. We can quantify the difficulties of mental health stigma people are subjected to without invalidating the incredibly harmful stigma that looms over physical health. We can explain the harm it can cause to individuals and to wider society, how it stops people from seeking help or ostracises them when they do. We can explain different terms and different illnesses, show that flippantly throwing around terms is belittling experiences people actually have, lift people out of their ignorance and show them that mental illness is not necessarily what they think. We can raise awareness without standing on top of those who are just trying to get through the same.

We can do better than this.

Paraplegia, questions and sex: A tale of squirrels.

Since becoming paraplegic I’ve become very used to being asked questions about my health; friends asking how I’m getting on and if I’m in pain, strangers gently prying and trying to find out what’s wrong and how it happened. Nosey but innocuous questions that I generally don’t mind answering, providing that it’s not done insultingly and they understand I won’t answer if a line is crossed. I’ve been quite endeared over the years by the sensitivity that people have approached the subject with.

Well, most of the time.

There is one subject where it appears that all boundaries and sensitivity go out of the window in a heartbeat. Be it friend or stranger, it’s a subject which arouses such curiosity that no answer is simply not good enough, and there really is no way to tread carefully. Sex.

Can I still have sex? How does it work? Can I still have orgasms? Can I feel it? Can I enjoy it? Is it different to before? From people I have known for years to people I have known for 5 minutes in the pub, as soon as the word ‘paraplegia’ comes up you can almost see the cogs turning as they desperately try not to ask but simply can’t help themselves.

One day last year I’d had quite enough of people expecting to know about my sex life and why I didn’t want to answer. I decided I’d finally explain the difficulties that come with arousal and let alone sex.

It is impossible for me to have sex.

You see, with paraplegia comes a secondary issue surrounding arousal itself. It’s problematic, to say the least, and proves a challenging barrier in sexual relationships which I have yet to find a way around. My poor husband and I have yet to even consummate our marriage as a result of this horrendous symptom of spinal cord damage. I can’t even tell you whether I can feel it, enjoy it, or climax, because there is a vicious and furry problem… Squirrels. That’s right, squirrels.

As soon as the vaginal juices start to flow angry squirrels start flying out of my vagina. Normally grey squirrels, but at certain times of the months, well.. I’m sure you can figure that out.

They don’t just calmly crawl their way out, oh no, they fling themselves. Ricocheting off my thighs and attacking the nearest thing they see. Scratching and biting, looking for the nearest place to nest or some nuts to nibble on. We’ve tried setting a side a plate of food for the, hoping they’d be distracted, but they wouldn’t exactly be the first set of nuts their beady little eyes would see were we to take a leap into the relatively unknown.

Would you really want to go prodding at an infinite nest of angry squirrels with your most precious of appendages? Nope, didn’t think so.

There you have it, one of life’s questions answered for you. Next time you consider prying into the sex life of a disabled person, please remember that no matter how deep your curiosity, no matter how desperate you are to know how another person’s body works, they could well have a devastating affliction involving wildlife. To constantly be reminded of this is deeply upsetting. Please, remember the squirrels.

Alternatively don’t be a cocktrumpet who goes around asking people, unprompted, about their sex life.

Painting by my friend Saria,