OCD and the need to confess things

I recently posted a poll to Twitter asking people what they most wanted to know about my OCD: The fear of contamination, checking things, health anxiety or obsessions of guilt.

I started writing a post about all, but it turns out people are most interest in the latter; guilt. And so, I thought I’d write a whole post about it.

Believe it or not, guilt is a big part of OCD. I know, it was news to me at first, too.

In an article on BeyondOCD, it explained that doubt and guilt are two of OCD’s main features.

It reads: ‘While it is not understood why this is so, these are considered hallmarks of the disorder.  Unless you understand these, you cannot understand OCD.’

The author adds: ‘In the 19th century, OCD was known as the “doubting disease.”  OCD can make a sufferer doubt even the most basic things about themselves, others, or the world they live in.

‘Doubt is one of OCDs more maddening qualities.  It can override even the keenest intelligence.  It is a doubt that cannot be quenched.  It is doubt raised to the highest power.’

Doubt comes in many forms within OCD, often we just don’t realise this. When it comes to OCD, people have their own ‘thing’. Some people wash their hands multiple times, others check the doors and ovens to make sure no harm comes to their home while they’re out. These aren’t just rituals, they’re doubts. Every time we re-check that door, we’re doubting whether it was really locked. Every time we wash our hands again, we’re doubting they were clean enough the first time we washed.

However, doubt doesn’t have to be about a physical thing – and occur emotionally, too. That’s where the guilt comes in.

A big part of OCD is feelings of intense guilt and the need to confess things. I didn’t realise this until recently. I’ve been struggling with guilt and I came across an OCD forum from people living with the same thing. When I put it all in place now, it makes sense.

When I was around seven or eight, I was on a family holiday and I was in a tent with a male family member – who was a year younger than me – playing mums and dads, as you do when you’re little. Half a year later, I broke down to my dad about it. I felt it was wrong. He was a boy, I was a girl, I was only little but I understood at the time that girls fancy boys. I worried whether playing mums and dads had meant there’d been something sexual in it. Of course, there hadn’t been – I was eight, for god’s sake. But that didn’t make it any better.

Even throughout my teenage years – and now – this is a memory that makes me feel uneasy because it’s one that made me feel so dirty at the time. Like I was bad.

The problem is, this is a memory I’d even as a little girl spent time obsessing over. I realise now that this is a symptom of OCD. We forget this because we spell ‘OCD’ out by its letters. We forget that it stands for Obsessive Compulsive Disorder. ‘Obsessive’ being the most prominent word in this case.

Just recently, at age 22, my guilt has been triggered again. I won’t go into it, but something happened a while ago that was completely out of character for me and I’ve spent the last week playing it over and over in my head, thinking about what I’d done and what I could’ve done differently. I’ve played various scenarios over in my head and it’s got so bad that I’ve actually started to convince myself of things I haven’t actually done.

Seriously, I’ve spent the evening crying because my head is telling me I’ve done something that I have absolutely no recollection of. I know in my rational head it’s not real, but my irrational head says otherwise.

In a study by Italian researchers in the journal Clinical Psychology & Psychotherapy, published in September 2016, it suggests that those with OCD may perceive guilt to be more threatening than most people do – leading them to finding it totally intolerable.

Those who feel intolerable guilt get rid of it the only way they know how: by confessing. OCD confessing is like washing your hands twenty times in a row. It’s a short sense of relief each time.

This is something I’ve been trying to control recently. I’ve been confessing and confessing and confessing to things that make me feel guilty. The guilt goes for a little while, before it hits hard once again with yet another thought to feel guilty about.

It’s a vicious cycle, and one that’s predominant in OCD – it starts with an intrusive thought, it’s followed by a ritual and it’s eased with a short sense of relief.

It’s a cycle that’s not easily broken, either.

I wish I had some advice for others going through these overwhelming feelings of guilt. But the only advice I can offer is not mine – it belongs to some wise woman on an OCD forum.

When you have an awful sense of guilt over an uncontrollable thought, ask yourself these questions:

What do you have to feel guilty about?

Is the guilt ‘real’ or is it your anxiety talking? AKA, is this a new sense of guilt that’s come out of nowhere, or have you actually done physical wrong?

Why do you feel guilty?

Assess the guilt. It’s likely you feel guilty because you have OCD and you are giving importance to your intrusive thoughts.

Who benefits from you confessing?

It may seem like a relief to you to get it all out, but it’s only temporary. Is confessing going to help you, or the person you’re confessing to, long-term?

Remember, you have OCD. OCD does crazy things, and the only way we can control it is learning to cope. Coping with guilt is hard, but it can be done. At least, that’s what I’ve heard – and what I’m hoping.

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Mental illness f*cking sucks

I just cried for five minutes because I’m exhausted.

I only cried for five minutes because I  am tired of crying. It makes me even more tired, and I’m tired of that, too. I haven’t admitted it properly to anyone just yet, only voicing my feelings here and there in short tweets, but the last three weeks have been hell. I have struggled to cope. I’m still struggling to cope.

In fact, I’m struggling so much that I have questioned whether there’s any point continuing if things don’t get better. The scary thing is that right now, it feels like things won’t get better. The even scarier thing, however, is that for once, telling myself that nothing would be better than this was the first time I really meant it.

There’s been many a time where I’ve said ‘I don’t want to be here’ when my emotions got too much. But there was always a small fraction of me that didn’t mean it. 10% of me was just crying out for help. But that 10% has now turned to 5% and even that can feel a struggle to hold onto.

For the past three weeks, I have been suffering with health anxiety. I usually hate that word, suffering. But this time I mean it. I have suffered. Deeply.

I have been panicking every day about becoming seriously sick. I have worried all throughout the day, my body filled with nerves and adrenaline, my heart beating fast, my stomach in knots. I’ve tried to drown out the feelings with medication, but the intrusive thoughts and the images are still there.

For a while I just couldn’t get them out of my head. Normally, when my head gets too loud, I escape in my dreams. But I can’t even do that now, because every dream is replaced with a nightmare. Each night a different dream, with similar themes. They’re terrifying. I have broken sleep, waking up and falling back into a nightmare over and over again. I just want it to stop.

The problem is that no matter how many times I tell myself I’m okay, a voice in my head tells me I’m not. And I feel these false physical symptoms that confuse the hell out of me. If Google tells me a certain illness will make me feel a certain way, I’ll start to feel these symptoms. It’s hard to tell what’s real and what’s not.

I know deep down where my fears stem from. I’ve had bad health a couple of times, and both times have lead me to critical condition because symptoms had gone dismissed, unrealised and ignored. And now, when my mind is at its worst, I panic that I’m getting sick but nobody’s seeing it, and that nobody will realise until I’m at my worst. This is terrifying.

It’s fucking awful spending every day worrying about bad things happening.

I have bipolar disorder, borderline personality disorder, OCD and health anxiety. The last two are somewhat the same thing. Obsessive, intrusive thoughts. I’ve felt all kinds of emotions due to my mental illnesses, but nothing like I feel with health anxiety.

I don’t know why I’m writing this. Perhaps I want to get across that health anxiety is a real thing. I do. But perhaps I also want to get things out of my system because I feel it’s what I need.

Regardless of the reason, all I know right now is that mental illness fucking sucks.

What I wish people knew about mental illness

According to Mind, one in four people in the UK suffer with mental illness. I am one of those one in four.

I live with a number of mental illnesses. Bipolar disorder, borderline personality disorder, OCD and health anxiety. And so, as you can probably guess, I’ve experienced mental illness from a number of angles. I know what it’s like to be high and what it’s like to be low. I know what it’s like to be psychotic, obsessional and anxious. But most prominently: I know what it feels to feel like there’s no way out.

I’ve recently been so mentally unwell that I’ve really struggled to cope. To be honest, I haven’t wanted to. I’m terrified of admitting this to the outside world but for the first time in my life, I said that I didn’t want to be here anymore and I meant it. The words themselves felt threatening. I was scared. I’d never felt this way before, and the fact I was actually feeling it, like, really feeling it, made me realise just how much help I needed.

Luckily for me, I’ve felt these feelings while being under the care of the Crisis team, who are currently coming out to my house every other day to check on me and carry out risk assessments. I am not a risk to myself. But other people aren’t so lucky.

Other people don’t have the support. Instead, they suffer in silence. I know, it’s an over-used phrase, but it’s one that rings true. So many people living with mental illness don’t have anyone to talk to. They feel nobody will understand; that nobody will care. They worry they won’t be believed if they speak out. Some people simply don’t have the energy to do so. And this is devastating. People in a time of crisis should not feel as though they have to deal with it alone.

But some feel like they must do so – and I feel a big part of this is because there is still such a stigma attached to mental illness. So many people who haven’t lived with it don’t understand, and this is still so obvious when people suggest things like going for a run, drinking more water or just ‘getting over’ the likes of depression and mood disorders. I just wish the people without mental illnesses would attempt to understand the people with. In fact, there’s so much I wish for in regards to mental illness.

I wish people saw mental illness like they would a broken leg. No doctor would turn around and dismiss a broken leg or expect it to get better on its own. They’d treat it immediately, they’d take it seriously. And mental illness deserves the same treatment.

I wish people would acknowledge mental illness for what it is – an illness. It’s not a personality trait or a lifestyle choice. It’s something that affects and consumes the lives of millions.

I wish people would stop offering unhelpful remedies for mental illness. That they’d realise that while they can be beneficial, healthy diet and exercise is not a cure.

In turn, I wish people would respect those who need medication for their mental illness. That those who don’t get it would stop dismissing people for taking it, as though it makes them weak or something. Taking medication isn’t weak. It shows strength in that you’re doing what you can to cope.

Most importantly, I wish everyone with a mental illness felt comfortable enough to speak out about it to a family member or friend. I wish these people didn’t worry they were going to be judged or not believed. I wish these people realised themselves that their illness is worthy of help. That they are worthy of help. That there are people out there who do care and will support them through a dark time.

But the people who are meant to be there as a support need to prove this themselves.

Whether you know someone with a mental illness or not, be kind, always. Be the person others can reach out to in a time of need, and never turn your back on someone who does so.

You never know you’ll be helping – or just how much.

If you are currently struggling in silence – don’t. Reach out to Samaritans, on 116 123 or by email,  jo@samaritans.org.

How I ended up being diagnosed with bipolar disorder

I’m much more open when it comes to writing about inflammatory bowel disease and living with a stoma than I am about my mental health.

I think this is namely because my stoma was something you could see, and my mental health is something you cannot – and therefore I felt more comfortable speaking out about it. As it was there, it was on my body. Nobody could say I was lying about what had happened (though I hope nobody would think like that anyway).

But with my mental health, it’s different. You have to take my word for it. And with the amount of stigma already attached to the likes of mental health, it feels very difficult to open up about it.

However, in this post, I’m going to do so. I started this blog to highlight both the effects of IBD and mental health and living with both – and so I wouldn’t really be sticking to my aim if I didn’t write about both.

I was diagnosed with bipolar disorder type 1 a-year-and-a-half ago. Bipolar disorder is a mood disorder that consists of both manic episodes and depressive episodes – and type 1 means that I have more of the former than the latter.

It wasn’t an easy diagnosis and it was one that took a while to be given to me.

My moods had always been erratic. I’d always been easily annoyed and confrontational. But as I reached my late teens, my temper worsened. I’d become angry by the slightest thing which would lead me to having complete meltdowns, crying and screaming.

But then after that meltdown, it was like a switch – I’d often have no memory of getting so distraught, imagining it in my head as if I’d only got a little upset.

After my stoma surgery in 2015, things worsened. I’m not sure if it was the traumatic experience of the surgery and hospital stay that led my moods to worsen, but I’ve never been as bad as I was then.

Me and my partner were in a bad place. A really bad place, in fact. He couldn’t do anything without me becoming angry and aggressive. We would fight and fight and fight until I was left screaming the place down.

But one night things got really bad. I had started an argument out of nowhere – I can’t even remember what the argument was about now – and I was a mess. I was crying, screaming and shouting. I was incredibly aggressive and my partner just couldn’t calm me down no matter what he tried.

I ended up putting myself in the bath tub, screaming until I went lightheaded and slashing my wrists. It sounds extreme, and it was. I’ve never experienced anything quite like it before.

After hurting myself, the pain took all of my focus and eventually I calmed down and I was put to bed.

But the next morning my mum came round unexpectedly. My partner had called her at 1am the night before, feeling helpless.

She told me she was taking me to the doctors, no ifs or buts.

I went to see a GP, and he referred me to a psychiatrist. As my mother also has bipolar disorder, it was easier for me to be referred as the disorder is hereditary. Therefore there was no second-guessing what was going on with me.

Four days later, after an urgent referral, I saw the psychiatrist. He asked me a series of questions about my moods, my life and my relationships. He asked me how I dealt with certain situations and about my emotional capacity.

However, he said it’d take a few sessions to actually diagnose me. He wanted to get to know my moods better first.

At first, he guessed I could be living with borderline personality disorder – a personality disorder in which sees you changing moods dramatically.

But a few sessions later and he’d changed his mind.

You see, my meltdown to you will probably sound like a depressive episode. But it wasn’t. Symptoms of mania don’t necessarily mean you feel elated and high as a kite.

It can also make you erratic, angry and irritated – which can lead to meltdowns such as mine.

Of course, I have experienced other symptoms of mania – which is what led me to my actual diagnosis.

There have been times where I have spent thousands of pounds in a few weeks, on things I didn’t even need.

I’ve gone to get one tattoo after another without even thinking about what I’m putting on my skin in the space of a few weeks (luckily I love all my tattoos, though).

I make snap decisions without thinking of the consequences and I often regret my choices after I become ‘stable’.

All of these things are symptoms of mania that I have lived with on and off for the past 18 months.

While I do have depressive episodes, I don’t have them as much as the manic ones. My depressive episodes can be just as severe, though.

I isolate myself, I stop looking after myself and there have been times where I have questioned taking my own life. But I know that’s the disorder talking and not me, luckily.

Being officially diagnosed with bipolar disorder was scary, but it was also a relief. It was a relief to know that I wasn’t crazy – that I was just ill. I was poorly and I needed help. I needed support and someone to understand, and my psychiatrist did just that.

Since my diagnosis, I have been trialled on various medications. Some good, some bad. One of the worst having made me gain a stone and a half in weight and giving me a chin full of acne. But it was worth it to make me feel better.

Currently, I take five different medications every night including mood stabilisers, anti-psychotics and sleeping pills, as I often suffer with nightmares and lack of sleep during a manic episode.

While some people don’t agree with medication, I can hand on heart say it’s been my life saver. I am currently the most stable I’ve been in a long time and I owe it all to that medication.

After months and months of despair and horrifically intense emotions, I’m able to think clearly and acknowledge situations before putting myself in them. And that to me is everything.

I’m now a very calm person and I don’t actually remember the last time I had a melt down – which is something I’d previously never thought I’d ever be able to say.

I am also very lucky to have such supportive family, friends and a loving partner who has stuck by me through everything, which I’m sure has helped in leading me to my stability now.

Of course, there has been a lot more to my diagnosis than rock bottom and stability – there is the matter of severe manic episodes, medication reviews and a depressive episode that led me to A&E and being seen by a Crisis team.

But I’m going to save all of that for future articles, when I find the courage to write them.

What life’s really been like since having reversal surgery

Over the past two years, I’ve written little bits here and there about my reversal surgery in a number of articles, but I’ve never actually written a full run-down of what’s happened since getting rid of my stoma. 

For a blog like this, I think it’s vital that I do so for people who may be finding it in hopes of searching for some advice or past experiences. Though for those people, I’ve got to admit my experience has so far been a negative one – but it’s good to remember that everyone is different.

I underwent the knife again in October 2015. Basically, the operation consisted of putting me back together. They pushed my small intestine back inside of my stomach, cutting through my stomach muscles, and attached it to my rectum. This is called a ‘straight re-join’ reversal.

What this means, is that with no colon – which is there to solidify your poo and hold onto it – my digestive system works very quickly, and the stool is unformed. Yep, you pretty much have diarrhoea for the rest of your life. Fun.

When I was told this, I wasn’t that bothered. I’d had so much trouble with the stoma – including constant leaks and burnt skin – that I was willing to give anything a try. Especially as I’d been told I’d likely only use the toilet between 2-3 times a day anyway, which was much less than the amount of bag changes I was having to do per day.

As mentioned in a previous post, the surgery took a lot longer than expected. One hour turned to three, and a three-day stay turned into two weeks.

Over the two weeks in hospital, I was very ill. I couldn’t eat for the first part, as my digestive system refused to work properly. Everything I attempted to eat wouldn’t digest and therefore I spent a lot of time vomiting. As I’d had a stoma for the best part of a year also, it took a while for my bowels to re-adjust to ‘normal’ life, and so for the first month I was pretty incontinent – which didn’t make me feel very nice.

After the blip in hospital, however, the recovery was pretty quick. The surgeons hadn’t stitched up the hole where the stoma used to be, as it needed to heal from the inside, and so it was pretty weird to be able to see into my stomach for a while, but apart from that, I felt fine.

I was having to use the toilet between 6-8 times a day, but I assumed my body would adjust over time and things would eventually slow down.

With this in mind, I decided to go back to work. Now, my work is a bit tricky. I live in West Sussex, and I work in London. Unfortunately because of all my health problems I haven’t been in a position to re-locate to London, and so I’ve always commuted. This has worked fine in the past, even with a stoma bag, but with my reversal things were made very difficult.

I’d be up early, needing the toilet as soon as I woke up, and then I’d end up needing it again on the train, and then when I arrived to work, and then again and again, and so on.

Soon after getting back into work I developed ‘public toilet fear’ – aka a fear of going to the toilet in a public bathroom.

This fear stemmed from several occasions while on my lunch break, where I have actually been confronted by several people for taking a long time in the stalls and for using the disabled toilets despite having a radar key. Because of this, I struggle now to use them which leaves me feeling incredibly blocked up and in pain – one time I became so blocked up that it actually caused an intestinal blockage.

Over time, the need to use the toilet excessively started to make things even harder, and by the time I’d reach the end of a working day I’d be in an excruciating amount of pain, to the point of actually collapsing upon arriving home.

It didn’t matter what I ate, what I drank or how much medication I took, my bowels refused to re-adjust to life without a stoma.

Eventually, my surgeon referred me to a physiotherapist to see if they could help. This was a three-month process of which I had to take off of work to avoid travel messing with the routine. However, sadly this didn’t work out and I was left with the same symptoms as before.

Since going back to work in February 2016, I have been on and off in the office due to my bad health. Luckily I am able to work from home, but of course I would much rather be in the office and I can’t wait to go back full-time.

It’s something I’m really looking forward to and is motivating me to get better, because currently, I’m at a loss of where things are heading.

Most recently, I have been experiencing horrible symptoms including abdominal cramping, blood and I still have to use the toilet up to ten times a day. I have been to the doctors on numerous occasions, to be given steroid prescription after steroid prescription.

And now, at a loss of what to do next, my surgeon has referred me to St. Marks Hospital in Harrow, London – a bowel specialist hospital that will hopefully be able to help me.

They will be doing a full physical and psychological investigation in hopes of fixing what my surgeon has dubbed a very ‘complicated bowel’.

Currently, all I can do is try to keep myself as comfortable as possible, not fret too much about what other people are doing, focus on my work and await this appointment that will hopefully be exactly what I need for a new lease of life.

It’s been a long, tedious ride and there are times where I’ve questioned the point in life, wondered whether I made the wrong decision to have a reversal and blamed my poorly body.

But at the end of the day, if I hadn’t gone for the reversal, I know I’d have been forever wondering ‘what if?’.

Why I’ve decided to start blogging again

At the end of 2015, I bid farewell to my old blog, morethanyourbag.com. 

If you’re not familiar with it, I spent the best part of a year documenting my time living with an ileostomy bag after undergoing emergency surgery for a stoma after unknowingly suffering with ulcerative colitis, a form of inflammatory bowel disease.

In October 2015, I opted to have the stoma reversed, which meant my small intestine would be stitched back to my rectum to allow me to go to the toilet ‘normally’ again.

Of course, I was excited. I thought it’d be a clean slate for me and that I’d be able to get on with my life and forget the surgeries had even happened. I even finished up my blog in the process, deciding that I’d no longer have anything to write about.

But I was so, so wrong.

I can’t believe it’s taken me this long to set up a new blog. I’m not sure if it was out of fear or just because I didn’t know how to put everything into words, but I’m hoping that writing about things once again will prove to be both helpful and therapeutic.

It’s been nearly two years since I had my reversal surgery, though it only feels like months ago.

Sadly, things didn’t go to plan from the get-go.

Prior to the operation, I had been told it’d last an hour and I’d be out of the hospital within three days. The operation ended up being three hours long as they had to re-cut down my original scar and through the stomach muscles, and I was in hospital for two weeks, incredibly ill.

I went back to work within 6 weeks of being out of hospital, and while at first things seemed fine, my health quickly deteriorated. I couldn’t get through a day without having excruciating stomach cramps until I’d reach a point of collapsing.

This was not helped by my need to use the toilet up to ten times a day – despite previously being told I could expect to use it around three times a day.

Alongside the cramps and the toiletry needs – which still go on two years later – I still experience other nasty symptoms that leave me feeling generally rubbish.

So basically, long story short (which I will be going on to talk about in future posts), my reversal hasn’t been very promising. And it’s been a real struggle to deal with, in all honesty.

Currently, I work from home, as I am waiting to see specialists at a new hospital for a full investigation into what is going on with my reversal – and why things still aren’t as they should be.

I am very lucky to have amazing employers who have been incredibly supportive of me and for that I couldn’t be more grateful. However, I can’t pretend that it’s not hard.

I’m happy to work from home but I find it so very isolating and lonely. I watch as my colleagues and friends venture out into the world, working in luxurious places and travelling, and I’m constantly stuck in my bedroom.

I know I can’t moan too much, but I feel my life would be so different if I’d never suffered with IBD.

But, as mentioned on my ‘about me’ page, I will be writing about more than IBD on this blog – focusing on other invisible illnesses I live with – including bipolar disorder.

I was diagnosed with bipolar disorder type 1, a type of mood disorder, around a-year-and-a-half ago. Type 1 means I have more ‘manic’ episodes than depressive – though each are as severe when I’m in either or.

Living with both IBD and bipolar disorder has been very hard because I find they can often counteract each other. You can feel good physically but awful mentally, and vice versa.

And in all honesty, there have been times where the bipolar episodes have made me feel worse than I ever have physically.

But with the right medication, I cope – and I’d really like to use this blog to venture further into each diagnosis, how I live with them and the repercussions that come alongside, in hopes that it helps other people going through similar things.

The name for this blog, ‘But you look great’, is inspired by comments frequently heard by people with invisible illness – usually coming from others who don’t quite understand that you don’t need to look bad on the outside to feel it on the inside.

Comments such are these show that so much more awareness for invisible illnesses – be that physical or mental – is needed.

For future posts, I will be talking about life with mental illness, mental breakdowns, self-harm, mental health medication and seeing mental health professionals – including the Crisis team – to highlight what it can be like to live with bipolar disorder.

I’ll also be talking more on my progress with my reversal, problems using public toilets, body confidence, all things poo-and-taboo, hospital trips and how the medical team intend to put me on the mend.