If You’re Happy & You Know It.

No one, not even Twilight-era Kristen Stewart, is completely void of emotion. With mental health & well-being never far from the lime-light, we are encouraged to become comfortable with our emotions, or the positive ones at least. There-in lies one of the biggest problems in healthcare right now; we’re so focussed on being positive that we don’t know how to handle anything negative, & some people take this so far as to condemn any & every negative emotion. When something bad happens, we don’t know how to react.

Take, for example, contracting viral meningitis & through a combination of medical failings & sheer bad luck, becoming disabled. Purely hypothetical, of course. No one, not matter how brave or stoic, is going to feel good about their entire world being turned upside-down, & everything they’ve ever known disintegrating like Thanos snapped it away (come on, it’s been well over a year, I think Infinity War spoilers are the least of our worries). Despite this, I was constantly being told to “think positive”, “look at the bigger picture”, or relish in the fact that I no longer took the simple things for granted.

More recently, I’ve been highly critical of accessibility features that prioritise aesthetics over function, & as a result simply don’t work. There have been a couple of ramps merged into staircases, zig-zagging back & forth across the staircase in tight hairpin bends. There were no railings, the corners were tight, it wasn’t wide enough to allow multiple wheelchairs to use it at the same time, it was miles longer than it needed to be, it was a nightmare for those with visual impairments, & no able-bodied pedestrian is going to stop to let someone disabled past. There was also a sign to display in car windows warning emergency responders that someone disabled was in the vehicle. The characteristics it displayed were so generic & vague as to be thoroughly unhelpful, there was no way of linking it to the disabled individual, & it made cars a target for hate crime. Then there was the stair-climbing wheelchair which was so bad I wrote an entire blog post about it.

In each case it was quite clear that no disabled person had been involved in the design process, which when your target audience is disabled people is kind of a bad business model, & I was backed up by hundreds of other disabled people, & many able-bodied too.

On each occasion I was lambasted for being too negative; I was accused of complaining for the sake of it, & not providing constructive advice. I was told I should be more positive if I wanted to make progress. When I pointed out that stopping harm is as progressive as implementing something good, this was disregarded entirely as an excuse. When I caved in & made suggestions on how to improve them (i.e. scrap the entire thing & start again), I was still too negative.

One particularly bad instance came with a long lecture about how she had terminally ill & disabled relatives, & thus she knew that only a positive attitude could get them through the days. As horrible as it sounds, I would bet good money that when her back was turned, those relatives breathed a sigh of negativity relief.

Being positive all the time is not positive. It actually hinders progress, as without criticism you would never improve something that needs improving. It also causes a lot of mental health issues; one of the biggest triggers for my depression when I first fell ill was the idea that I couldn’t find anything positive in my situation. It made me think that my emotional response of “oh sh*t” was completely wrong.

In particular, mental health is one of the few areas where men are worse off than women. Women are encouraged to be in touch with their emotions, but men are told to “man up”. They’re never taught the appropriate way express emotion because they’re just told to suppress it, & they’re also taught not to seek out help when they need it. Women despair when a simple rejection is taken as the biggest insult, & at least part of the reaction some men have to rejection has to be attributed to this.

Quite simply, the “positivity brigade” does more harm than good. They hinder progress, worsen mental health, & stop people developing appropriate ways to express emotion. The reality of the matter is they simply cannot handle criticism & negativity because they themselves have been victims of the same positivity brigade they now endorse.

M.E Awareness Week: Day 4.

TRIGGER WARNING: Please be advised that this post contains explicit details of how & why I attempted suicide. If you are affected by issues surrounding mental health, please refer to mind.org.uk for help.

From Bad To Worse.

By now mum had become very ill, but over the period of the summer, her asthma was not too troubling. Her overactive thyroid still caused issues, and fluctuated. She often felt tired and sick, but with the care of our good GP, and the endocrinologist, she seemed to be as healthy as possible under the circumstances.

Mum was always very determined to get through illness, and carry on as normal. Even when she was feeling really bad she would get out of bed and continue with the housework. This encouraged and inspired me to do the same whenever it was possible. She was the rock at the centre of our family, who supported and cared for us through the bad times as well as the good. She kept the peace during family rows, and supported me through my friends’ rejection.

Being left alone so suddenly had caused a lot of pain, and the sadness did not ease as the summer passed. In fact, the longer the silence went on, the worse I felt. I yearned for teenage company, face to face, as I had no brothers or sisters. I had AYME, but it was harder to type a message about it than talk freely.

***

At the end of June, I was given an appointment to go and see CAMHS. There, I met a psychiatric nurse and a social worker, who interviewed both me and my parents about the depression.

I explained my situation; that my depression was prominent but stable. I asked for some help controlling it and potentially overcoming it, as beating depression is virtually impossible to do without some form of support. In times of sheer desperation all I could think about was that I wanted the pain and the misery to end that very instant and never come back. It was impossible; the only way out was death. Suicide. I didn’t want it to come to that, but the thought kept haunting me. I didn’t mention this because it seemed silly and pathetic. I told CAMHS about how I felt like a failure, how I was angry about being ill, and how I blamed myself for my mums’ illness. My reasoning was that if I hadn’t fallen ill, and listened to doctors’ instructions, then the stress of looking after me would have saved mum from illness. I left out the part about my friendship situation; I wasn’t comfortable to talk about that. It was still too painful to me.

My parents stayed in the room with me, and were asked about my school and social life, what our home life was like, my behaviour patterns, and possible triggers.

At the end of the session, it was agreed that I should start a therapy commonly used for M.E patients called C.B.T (Cognitive Behavioural Therapy). It looked at thought patterns, and how they tied in with behaviour and emotions. It addressed the issues faced with depression, and aimed to get the patient thinking clearly, logically, and positively. It appeared to be a very good idea.

It was too good to be true. I was placed on the waiting list to receive C.B.T, and waited several months to hear anything at all. Once we did hear something, appointments kept getting cancelled, for lame excuses. It looked like I would never get the C.B.T after all.

There was a more present concern, however, and this preoccupied my mind for the rest of the summer.

The depression wasn’t as stable as I thought it was. I would break down in tears for no apparent reason, without even the tiniest trigger. I would become suddenly very angry and was easily irritated beyond control. I felt permanently useless, worthless, lonely, unwanted, angry, confused, hurt, sad, and downright miserable. I hated myself, and began to punish myself. I would scratch into my wrist with my fingernails and keys, drawing blood and leaving permanent scars. I managed to hide this from my parents by hiding the scar under my watch, a bracelet, or a long sleeve.

I spoke to others on AYME, and although they gave me a little boost, I would soon go back to feeling depressed again. I was trapped in a haunting reality with no escape. It was far too real to hide from, and it was far too strange and embarrassing to talk to people about. I kept my feelings clutched to my chest, where no one could see them, and use them against me. Depression is stereotyped and mocked at by teenagers and young adults. It is laughed off. Yet, for those that have it, it is no laughing matter.

Rock Bottom.

It was a mild and sunny day in July when it happened. I had been feeling particularly low for about two weeks, and the constant misery was taking its toll. I had heard nothing from CAMHS about the course of CBT, and I was still suffering the cold shoulder from my friends.

I was desperately lonely because of this. My estate contained very few teenagers, and those that did live there didn’t know me. I couldn’t even get out for a walk around the park. Loneliness leads to a dreadful, empty boredom that seems to stretch on forever. I began to brood again, and couldn’t stop thinking about the meningitis and the M.E. It didn’t seem fair. The poor treatment at school, mum’s illness, the silence from CAMHS, and my friend’s rejection ate away at me. I couldn’t see a possible way out, and felt cornered.

I remained uncommunicative about my thoughts. I thought that they were shameful, and that if I kept them to myself they would eventually go. Instead, they plagued me on a more regular basis. My parents didn’t know the way I felt, neither did CAMHS, or anyone else for that matter. I even kept it quiet from AYME.

All I could think of was how I wanted this journey to be over and done with. I wanted it to be behind me and forgotten. I was always one for a challenge, but this was too much. I was in too deep this time. The pain, grief, anger, confusion, misery, torment, and darkness was with me all the time, even during sleep. My dreams were sad, and full of friends’ faces- friends I no longer had. When I woke the pain was as fresh and prominent as ever.

I was sat in my room, as usual. There was some music playing in the background, but I wasn’t really paying it any attention. I was picking at the scar on my wrist, brooding, when the thought came to me. There was a way out. It wasn’t pleasant, and it would be regarded cowardly by some, but what did it even matter anymore. The thought was of suicide.

I wasn’t overcome with a tidal wave of emotion. There was no guilt, pain that it had come to this, or even misery that this was how it had to end. I felt numb. Being numb was sweet relief after all my confused emotions, and it was wonderful to feel so calm and tranquil. If anything, the only thing I did feel was hope for escape. The answer to my problems had been provided for me in one, glorious brainwave.

I ambled down to the kitchen, trying to look as aimless and inconspicuous as normal. I didn’t waste the time to write out a note; not when the end was so close. I pulled a glass out of the kitchen cupboard, and filled it with water. Then, I reached into the cupboard, and got the tablets. I wanted to do it this way because I would fall asleep, and my body would just forget to wake up. I would slip away quietly, in a warm haze of drugs.

Mum knew something was up. There was an atmosphere of calm that was unusual, and also an air of determination, something I had been lacking for a long time. She came through to the kitchen, and before the first pill had even reached my mouth, the packet had been wrenched from my hand, and the water was falling down the drain.

I tried to fight back, but all of a sudden I couldn’t seem to find my motivation or enthusiasm. I was back to the dark, lost way of life. Instead, I crumpled up into a heap, and cried. They were tears that had been held in for years. They were tears of frustration, and anger, and pain. They had been bottled up for years.

As I sat there and cried, mum phoned the CAMHS office for help, but apparently there was nobody in and help was refused. I was beyond caring. I was such a failure that I couldn’t even carry out suicide, and I didn’t want some nurse questioning me about it.

It would be a long and tiring haul. It would be endless hard work. However, I had to beat the depression. I couldn’t give in to it now. Billions of people suffer illness, deaths of friends and family, famine, poverty, war, abuse and much more besides, and they all pushed through it.

So I would too.

I would need support, love, care, and trust, but I would get there. It would just take time.

An Unconventional Medicine.

The difficulty in knowing how to deal with poor mental health is the fact that everyone’s case is very individual; everyone has different triggers, responses, and coping mechanisms. For me, my strongest coping mechanism is to write.

Writing about an upsetting situation helps me think about it logically and clearly. Converting emotions into words forces me to think through what happened stage by stage and piece together which bits are the most problematic. Watching the words appear on the screen in front of me helps me rationalise my reactions, allowing me to adopt the perspective of the reader reflecting on the choices of a character in a book. I don’t necessarily publish what I write in response to a tricky scenario either, although sometimes a passage will grow and develop into something I’m comfortable with others reading.

I picked up on this technique when I was having frequent accessibility issues at a building I used on a daily basis while at university, which despite my feedback and advice continued to occur, becoming increasingly frustrating as the months passed. Often I would come out of the building trying to hide the fact that my cheeks were flushed and I was shaking with anger, so nonchalant and disinterested was the response of the members of staff. I took to keeping a record of accessibility issues, when and where they occurred, and if possible who was responsible for an issue. About once a week I would submit this alongside an email reiterating my frustration to a more senior member of staff, but when that didn’t have an effect I took it to the highest level of management. The problem lingered but lessened significantly, and on my more recent visits I haven’t had any difficulties at all.

What I noticed was that keeping a record and writing an email about the incidents greatly helped calm me down, and while still annoyed and aware of the problem, I wasn’t fixated or brooding about it constantly. I decided I’d try this technique with other problematic scenarios, and was surprised to find out just how effective it was. The many issues I had faced at school concerning a lack of both physical and emotional support formed two blog posts, and my Twitter followers are bombarded with photographs of blocked access routes as I come across them. I found that while my memories of these cases are far from positive, I didn’t revisit these memories as regularly as I once did, and overall I simply felt happier. It worked.

If you want to try writing as a coping mechanism for difficult situations, it’s important to remember that no one ever has to see it. Computer files can erased, and paper can be shredded. It doesn’t need to be coherent, grammatically correct, or full or delicate vocabulary. It won’t work for everyone but it did for me, and it helped me put together something I feel truly proud of. Writing is my therapy.

The Clouds Behind the Silver Lining.

Given the health issues I have had throughout adolescence and early adulthood, it is no surprise that I suffer from chronic depression. Some argue that since depression is so commonly experienced among chronic fatigue syndrome (CFS) sufferers that it is a symptom of the condition, and in our cases not a disease in its own right. I find it difficult to fathom how this makes much difference as both conditions are treated by trying to control the symptoms, and not by targeting the cause of the diseases which are largely unknown.

Whatever the case may be, I find the depression one of the most difficult things to cope with surrounding my condition. If I am tired I go to bed for a bit, and if I am in pain I take some pain killers and have a warm shower. Even if these do not eradicate the symptoms completely, in most cases they will lessen them to a tolerable level. However, once the depression rears its ugly head there is very little I can do about it, and it quickly escalates until it becomes all-consuming and inescapable.

A lot of non-medical experts, and even a few supposed experts, have told me that if I exercised more I would be happy. If someone can be happy while experiencing exhaustion, intense muscle aches, joint pain, dizziness, nausea, and headaches for several days following such exercise they honestly deserve a medal.

One of my most severe periods of depression came during the summer of 2012; I was 16 and was supposed to be enjoying the long summer months before returning to education to start my A-levels. During that time the peers at school who could loosely be called friends barely made any contact with me despite having multiple opportunities to do so. My school were arguing about whether I would be allowed to use my wheelchair around school, and whether I could have someone to help me get around as I couldn’t push my own wheelchair, nor could I afford a powered one. The extensive periods of free time lead me to brood over the negative aspects of my life; I had been ill for 18 months at this point with no signs of improvement. I felt that my teenage years, the time all the adults told me was so precious and that I shouldn’t waste a second of, was being taken away from me.

It was a series of minor negative events experienced in close proximity to each other that pushed me too far, and I tried to commit suicide. When I had finally been deterred from doing so by my horrified mother, the mental health service refused to help, and unable to get to see a GP we were left alone, reminding me all too well of the meningitis.

After the suicide attempt I began to self-harm, and it quickly became an addictive and obsessive behaviour. The mental health support systems available in my area on the NHS were appalling, making their services as inaccessible as possible, both physically and mentally. When I finally managed to see a mental health worker the treatment I received was awful, and I came out of the supposed therapy more depressed than when I went in. Fortunately a local charity provided a counselling service of a much higher standard, which was friendlier and more accessible. By the end of the therapy I received from them, and alongside the introduction of anti-depressants that worked well alongside my other medication, I reduced and finally stopped self-harming altogether.

Although I have had brief relapses into self-harming, none of these periods have been as serious, nor lasted as long as before. I still bear marks on my wrists and legs, and after much deliberation I have chosen not to cover them up with tattoos. I fully understand why people might choose to do this and hold nothing against it, but I do not understand why I should be made to feel any less of a person due to the symptom of an illness, in the same way as I don’t hide the walking sticks I use inside of my flat.

I still suffer from depression, and after a recent bout of very serious ill health I have had to increase the dose of my anti-depressants as a temporary measure, until I am at a more suitable time and place to address the issue. However I do not feel as if it controls my life as much as it did, and so far I have not attempted suicide again, and at least my self-harming tendencies have significantly reduced.