Piles of orange leaves. Silver grey skies. Frost on your car. Tiny beads of condensation on cobwebs in the morning light. Pumpkins. Soup. Crackling fires. Dark, starry skies.
Most people say “yes,” to these things. These things are items and weather phenomenons that appear on Instagram around this time of year, every year. Cups of coffee held in gloved hands. Tightly laced boots standing in mountains of brown and yellow leaves. These are the things that flood our supermarkets, the things we write poems about, the scenes we find on Christmas cards. They are lovely, seasonal, precious, delightful. They are the heralds of Autumn, the trumpeters of the changing seasons. We celebrate them because we are attuned to relish a time of Harvest, of plenty. And because they make great social media posts. However, there is another side to all these special things. As much as I am totally here for anything that uses “pumpkin spice” as a descriptor, autumn only means one thing to me: Winter is coming. Some people have as much delight in winter as they do in autumn, but for me, I take little pleasure in either.
Some people have as much delight in winter as they do in autumn, but for me, I take little pleasure in either. Where most people see varying hues of orange when they think of autumn, I see darkness. I see long, winter nights lit with bright yellow lights that bounce off black windows. I see all of the moments when I have struggled with mental health, the moments I have curled up on a kitchen floor with dark, November rain pounding against the window. It’s not completely accurate that all of my worst mental health moments have happened in winter, but for a long time I have felt like that is true. Almost twenty years, in fact.
That’s twenty years of a tightening in my stomach when the nights’ close in at four o’ clock. That’s twenty years of feeling so heavy I can barely get up in the dark early mornings. That’s twenty years of fear.
The worst thing about this fear has been its insistence. It has been the Japanese knotweed of fear; years of therapy, hard work, and time put into my mental health and yet, endlessly, year after year, I can’t shake the trepidation. Winter is coming: feel fear. However, for the last year, I have been in quite intensive therapy, and I now know that no feeling that comes into my head just gets the run of it without my consent. Feelings aren’t in charge. They happen, and sometimes I can’t control them, but they are not in charge and they can be changed.
So even after twenty years of fear, I think there is something more to be found. Perhaps there is joy to be found in the changing seasons, the slow death of summer and the coming of winter. I am going to make a real effort to “embrace” the winter, and see what happens. I’m going to see if I can turn the things that have previously been triggers for anxiety, into things that could bring me joy and comfort. In that spirit, I posted a picture of a coffee cup on Instagram, and some very fetching leaves. Afterall, maybe I can find something good in here. Winter is coming, and maybe, this year, that can be a good thing.
Can you think of a moment that defined your life? Recently, I’ve had cause to reflect. My partner and I have been together ten years this October. The other day I found myself trying to recall the moment when I knew how special he was to me. Like many important relationships in my life, there wasn’t an event or an incredibly clarifying conversation where we moved from a state of not being something into being something. Rather, there was a collection of small, mundane things that consecutively built up to the same truth: we mattered to each other. I particularly remember driving to work in 2007, coming to a roundabout in an industrial estate that I passed every day, and having a very clear realisation that I was thinking about a future with him and that I had assumed he was thinking about one with me too. I made myself a mental note to find out if that assumption was true. I crossed the roundabout. Six years, two universities, and one engagement in Crete later, we got married. It was a considerably larger and more public defining moment in our shared life, and yet that small moment, crossing a roundabout in 2007, is still just as important to me as the memories I have of our wedding day. The little things matter.
The little things matter in therapy too. Part of my therapy was learning to practise flexible control, which is basically when someone with over-control tries to lessen their control in small, non-threatening ways. It sounds bananas when you’re doing it – after all, why would wearing different shoes ultimately enable me to cope better with illness, sickness, and an eating disorder? Well, it’s the same principle of learning anything – Practice makes perfect. There is often a disconnect between the first stages of learning something and the final stages – when I teach dance to beginners, a lot of what I teach is learning to understand rhythm and music – the steps come later. Everything has to be built on something.
So the parking in different places, wearing different shoes, changing my brand of juice, trying different restaurants, dyeing my hair, it all helps me get to a place where I can challenge the over-control behaviour that unhealthily governs parts of my life. It helps me minimise my over-control habits and compulsions, each practice making me more and more comfortable with challenging my long-held views about myself and the world. I’ve seen it work – I am more capable than I was before therapy – but it has also given me a sense of enrichment that I didn’t have before. Sometimes it can be a chore, forcing myself out of my comfort zones even in little ways, especially when I find it aggravating that I have to drive back home the long route rather than the short route just to prove that I can do things differently, but it’s actually also been surprisingly empowering. In the road of recovery, so much of what is achieved isn’t really quantifiable. Learning to respect yourself, learning self-care, learning self-belief – these are not things you can measure in a series of actions. It is more likely that you will never be 100% sure that you have achieved them. Rather, you will trust the words and observations of others, notice gradual changes, and choose to believe that maybe, just maybe, you have become a different person. It can be a long, bleak slog, but logging those little things has a wonderful upside to it. Every day I have done something, a tangible, physical thing that goes towards my recovery. Strangely, by challenging my over-control I am actually gaining something better. I am gaining power.
Power is different to control. Whilst control seeks to contain something that it can’t really change, looking to bind it and cage it with various techniques to keep fear and anxiety at bay, power stands up to it. Power is what allows me to think that I am maybe strong enough to manage the things I am frightened of, that I might be able to manage them without my over-control behaviours. That power, power that comes from turning towards the fear rather than away from it, from relinquishing control rather than tightening it, is slowly and gently setting me free.
It could set you free too.
Practicing flexible control isn’t difficult, but it does take thought and work. If you think that maybe flexible control might help you and you want to chat about it, do get in touch. Instagram me, message me, or Tweet me. We can walk it through.
When my older sister got married her first dance was to one of the cheesiest songs of the last ten years: “Little Things,” by One Direction. My other sister and I laughed when it came on; it was so typically surprising of our sister and her partner, who are full of dry wit and humour and have been through hell and high water between them, to express their feelings in this overt, emotional number from a teenage boy band. They sang tipsily to one another, and it was tender and lovely. For a moment, I almost forgot it was One Direction. Until the DJ started playing “You don’t know you’re beautiful,” and the Groom went bonkers. However, an unexpected consequence of that song choice has been that the words to the song always come back to me when I use the hashtag #thelittlethings on posts about mental health:
“All these little things, it’s you they add up to.”
That is the wonderful thing about practising flexible control and the great hope of the whole process: it’s cumulative. All of the hard work we do, all of the little things that we do to challenge our controlling tendencies and face our anxiety and fear, it all adds up to something. Recovery.
It’s awkward, finishing therapy. I’ve never known it not to be. This might be because therapy is nothing like what you see on TV. The therapists I’ve seen on TV say goodbye to their clients with tears and moving movements where the client walks out into the sunshine, gulping back grateful tears, marching into their future with their head held high. My experience is not that. Instead, I mumble through an awkward conversation, saying “thank you,” too many times and shuffling out of the door without making eye contact. Granted, I am not great at goodbyes even with people I sincerely love, let alone with strangers I have spilled all my secrets to.
My therapist never feels more like a stranger than at the end of the journey. That’s not really a bad thing, in fact, I’m sure it’s how it’s meant to be. A therapist’s job is not to be someone who will be missed and longed for, that is the opposite of what their job is. Their job is to enable you to manage your own life without their constant input. Consequently, the feeling at the end of therapy is just like that. It’s awkward because you are essentially standing in front of someone and admitting that you might not need them in your life anymore. That they are dispensable to you.
There is fear in that, too. Fear that maybe I do need my therapist still. Fear that one morning I might wake up and need help again, that the sunshine I am currently standing in will fade to darkness and I will be alone and afraid again.
But I have learned that I cannot live my life in fear of a relapse that might never come, so I finished therapy.
So what else have I learned?
Well, I am hoping to blog about what I have learned quite regularly. My hope is that this will not only be helpful for others who might be struggling, but it will also help me remember what I learned, and to live in it. First, however, I need to tell you a little bit more about the type of therapy I’ve been having.
I’ve been having RODBT therapy. This is (ready for it?) Radically Open – Dialectical Behaviour Therapy. This is based on DBT (Dialectical Behaviour Therapy) which is a type of CBT that was developed for patients with Borderline Personality Disorder. RODBT was developed specifically to help people with difficult to treat Over Control Disorders. Examples of over control disorders might be: anorexia nervosa, chronic depression, and Obsessive Compulsive Disorder. Basically, it sums me up!
That tells you what RODBT is for, how it used, but it doesn’t really tell you what it’s like. So what is it like? What is like to be having the type of therapy that, when you type it into google, throws back a long list of academic and medical articles? Well, sometimes, it was like a lesson. One thing about all CBT based therapy is it is essentially re-informing a person’s understanding of themselves- there’s a lot of learning there! RODBT is no different. There were a lot of worksheets, a lot of “terms,” a lot of re-learning what it means to be me and live in my brain. For people who think that therapy is easy, that you simply show up and recount your day and your shopping list to a friendly face, it could not be less true. Therapy is hard work. RODBT is hard work.
It is also very illuminating. In so many ways it has completely opened my eyes to my own behavior, but let’s just focus on one for today. So here it is: One thing I learned from RODBT.
Forcing myself to change doesn’t work
Something that happens a lot with mental health is people on the outside will say; “why can’t you just try to eat something/go to an event/not be anxious and see if you get through it? Can’t you just push through?”
RODBT taught me that the answer is No. No, I cannot. A person with my temperament, someone with over-control can push through, but they shouldn’t. It will do nothing for them. They will get through it, but they won’t get better. In fact, they will only get worse.
That probably doesn’t make sense, so let’s take an example, something that’s reflective of my experience. As a child, I was frightened of going to new places. However, I often had to, even if I was frightened. My brain would identify that this was something that threatened me, something that made me unsafe. However, since I would not have the power or control to leave the situation, I would emotionally detach and shut down. This would result in minimal communication. My Mum and I once went on a day trip to Israel from Egypt where I barely spoke two words to her the whole trip. At the time she probably thought I was being a grumpy teenager, (and yes, there was probably something of that in there) but inside my mind, I was threatened by all these new factors that I could not control, so I had withdrawn. I got through the experience, of course, I did, but I did not have an enjoyable time getting through it. I came away from the experience reinforced in my own mindset that I did not enjoy traveling to new places that much. What does this mean? Well, it’s strangely simple: Exposure therapy does not work on people with Over Control disorders.
A person with Over control will simply withdraw and survive and learn nothing from the experience. In fact, their misconceptions will only be reinforced. An anorexic forced to eat will not heal. A person with OCD cut off from their routines will not heal. They will indulge their enforcers, they will eat and they will stop, but only for the time that they are made to. Then they will breathe a sigh of relief, thank God they survived, and go back to their over control. They will not have learned from the experience.
So how does a person with an over-control disorder learn?
Well, instead of being forced out of their control, feeling threatened, and then withdrawing, they can learn to relinquish their control in small moments. Instead of being forced to eat a whole meal, they can choose to do something less threatening to them, something that challenges their control but not in a way that is very threatening. If someone had told me that I had to eat everything they said, I would not be able to do it. But I chose to challenge my control in areas near to food. I chose to try a different brand of the juice I always drink. I chose to eat the same dinner I always eat in a different place. I learned to challenge myself without triggering my threat response. (For the full journey of this, please check out my instagram @elphreads for my #OCDchallenge)
In my mind, I characterize it like a zookeeper winning over a timid sloths affection by introducing them to very small pieces of fruit, one at a time. Then maybe one little stroke, one little petting session. As someone with over-control, I need recognize my sensitive threat trigger and try to work with it not against it.
So no, unhelpful, ignorant person who asks me if I can just push through. No, I can’t. Because whilst that might put my idiosyncrasies, my needs, my strange behaviors out of view, whilst that might solve your problem of having to deal with all of those things about me, it won’t help me. It won’t help me build up the positive associations I need with this thing in order to grow into a healthier human being.
Forcing myself to change doesn’t work, and I’m not going to pretend to do it just to indulge an unnecessary, cruel stigma.
That’s one thing I’ve learnt from RODBT.
Tune in next week for the next thing I learned from RODBT.
If you have questions about RODBT, or about CBT, or perhaps you are currently going through the therapy yourself do drop me a line at @elphreads on Instagram or @EmmaLouisePH on Twitter. I want to hear from you! Let’s go through it together.
I am driving home from town for the third time today, and I am seething. The first journey was to the computer shop, the second journey was to the computer shop with my old computer to exchange it, and the third was to get the charging cable I had forgotten in order to make the exchange. All in all, I have tried to buy a new computer three times today, and I am seeing red about it. I want to scream and shout and kill plants and kick pigeons. I am moving into the place beyond light frustration into genuine, OCD fuelled rage where I feel like I need to rip all my skin off. Why? Because this will be the third time I have visited the shop, and that means it will be the third time I have paid for parking. I will have spent £3, and for that, I am in a tailspin of fury. This is just one of the delights of Obsessive Compulsive Behaviour.
I get annoyed easily. I am terrible in queues, I hate it when plans change, I don’t like altered train services, altered bus services, bad traffic conditions and I take personal affront when the weather does not behave in the manner predicted by my iphone. (“How DARE it rain? How DARE it?! I wore PUMPS today!”) However, my irritability is just one side of the brutal coin of Obsessive Compulsive Disorder and on the other side of the coin there is crippling anxiety. I’ve been going through therapy (those of you who read this blog will know it’s not for the first time) to try and get a grip on what it means to live my life by the constant turning of this coin. It hasn’t been easy, but it has been helpful. Now my therapist wants to make it even harder. I am hoping this means it will also become even more helpful.
I have been challenged to do something that confronts my over-control mindset every single day. This might be little things or big things. For example, in the last two days, I have parked my car in the “wrong” spot and I have put my yoga mat in the “wrong” space. Agonizingly, I had already put my yoga mat in my normal spot in the class. I was then gripped with a sense of obligation to challenge myself and had to excruciatingly pick up my mat, move my mat, pick up my stuff, move my stuff, and sit back down in the new spot. I hated every moment, and the view of the instructor was much worse than my usual spot, but I did it! As you can tell, I have a very pronounced sense of “right” and “wrong.” Like a lot of people with over control tendencies, my life is governed by an intricate set of rules that this day-by-day challenge will hopefully give me an in-depth awareness of. The whole idea is that by breaking these small rules, challenging myself repeatedly in ways that are non-threatening, I will eventually be able to challenge myself in the areas that I find incredibly threatening. Food, for example, and showing emotional vulnerability.
I don’t know if this is the key, but to keep myself accountable and to keep it fun, I am keeping a daily log on Instagram and Twitter called “These are a few of my least favourite things!” I wish I could say that the public nature of this little project is merely due to my heartfelt desire to reach other people and raise awareness, but honestly, a big part of this is my personal determination to prove to my therapist that I did it. By making him look through every. Single. Photo. Now, who wishes they had set me easier therapy homework? Uh huh. He does. HE DOES.
I am also tentatively hopeful, quietly excited, that perhaps this experiment will help me push the boundaries of myself in not just painful ways, but positive ways. Maybe the heavy chains of my routines and rules will be broken and give me the freedom to do those things I have felt too afraid to do. We will see.
So follow along with the journey! You can find me @elphreads on insta, and @EmmaLouisePH on Twitter. To get you in the mood, here’s a picture of a car and a yoga mat. It might not look like much to you, but I promise, it matters a great deal to me.
I am lying face down on the bed. I am exhausted and my throat is dry. My stomach has stopped churning, which is good, but now I ache all over. I feel like one big gust of wind could knock me over. Except it wouldn’t need to. I am already over.
The phone rings. It is an unknown number. Like all millennials, I do not answer unknown numbers, or really like talking on the phone at all, but I answer, thinking it could be my poor friend with whom I had to cancel plans today.
It is my therapist.
“I wanted to make sure you got home safe.”
Of course he does. I had a panic attack followed by an IBS attack in his office this morning and spent half of our session in the toilet.
“Yes I did, thank you.”
“Good. You did very well today. Don’t beat yourself up.”
“Okay. I won’t.”
I say it like it is the easiest thing in the world to do, as easy as making a cup of tea or turning on a light. By the time I have hung up the phone I know it isn’t. My mind is already reaching for the metaphorical stick. Afterall, how could I do that in his office? How could I bother him with my IBS and my fear? And what a waste of money, spending half of the time in the bathroom! Then there are the plans, the carefully made, lovingly organised plans with a friend that I have cancelled. What kind of person does that? Then there’s the husband, who has had to be recalled from the office in order to watch over me while I nap, fetch me cups of tea and medicine, and generally apply the soothing balm of his presence to the situation. What about his needs? What about his work and deadlines and own anxiety? I am selfish. I am a bad wife. I am a bad friend. I am a bad patient. I am a bad human. I am beating myself up.
Sometimes I am selfish. Sometimes that selfishness might make me a bad wife. For instance, I hate the washing up and in the tournament of “who breaks first does the washing up,” my husband has been the biggest loser of the season. He likes things clean. I do not care about clean really, not unless it’s going to kill me, but I could care for him. Often, I still don’t care. Sometimes I am a bad friend. I screen calls and forget to return texts I have already read. Sometimes I am a bad patient. I can grow resentful of the treatment process and uncooperative. I rarely do my homework. Sometimes I am a bad human. I love animals but I still eat peanut butter, even though I know palm oil is hurting the Orangutans, and I still eat meat, even though I ethically disagree with the meat industry. I think recycling is boring. Sometimes I am all of those things, but not today. Today I am just ill, but I am still beating myself up.
I am beating myself up because my body is not performing the way I want it to, the way society wants it to. I am beating myself up because getting ill feels like failing. Sometimes, despite what other people say, this world makes it seem like failing too.
I’ve been reading a lot about disability discrimination recently. Not because I’ve been researching, but because people have been writing more openly about it in this country than perhaps they have done before. Also, government cuts are beginning to hurt people more and more. I read this piece in the guardian and was mortified by the stories I heard. This morning I listened to the radio on my painful drive back from therapy and heard women’s hour discussing the different unfair dismissal claims people have struggled with. When I came home I read this on buzzfeed, detailing people’s own experience of the treatment they have received at work regarding their health. A lot of them have mental health problems.
What stands out to me is how oppressive our societal expectation of “normal” is. We do not seem to have created systems that reflect the varied needs of our citizens, rather our systems seem to be coming more and more primitive. If you can’t hunt, you don’t eat. It is no wonder to me that there is a push more and more towards doctor assisted suicide as the way to finally manage terminal problems. If you cannot guarantee that your pack will stay with you to the bitter end, why would you want to see the bitter end?
“I don’t want to be a burden.”
“I don’t want people thinking I’m lazy.”
“I don’t want to take up time and space.”
“It’s my problem, not anyone else’s.”
“I don’t want others to suffer.”
“I’m not a scrounger.”
If you have a chronic illness of any kind, mental or otherwise, I know you will have recognised one or more of those thoughts. You will have thought them in the midst of a panic attack, too scared to pick up the phone and call for help. You will have thought them as you dragged yourself into work when you were really too ill, and you will have thought them again on the times when you simply could not drag yourself in, and had to call in sick. You will have thought them when your support system gathers around, giving you love and kindness but also their precious time. You will have thought them when you have laid in bed at night, unable to sleep, because you are so worried about finances. You will have thought them when you tell your parents or your friends what you are really feeling, and see the disappointment and pain in their eyes.
These thoughts are the ones we carry around with us, the ones we use as whips to keep us moving forward. We propel ourselves through pain with them, we push ourselves and squash our real feelings with them, because we have internalised on the deepest level this grand, horrible lie: Being ill is not an excuse, it’s a weakness.
There is research that tells us otherwise. There are therapists and scientists and advocates and hopefully, friends and family who tell us that it isn’t true, they don’t think being ill makes us weak people. There is the great, unbendable logic of the universe, the truth that all humans must die and that to die all humans must experience physical decline, that it is part of the fabric of life that we all get sick from time to time, but for all of that and every person who counters the lie, there is a person who, inadvertently, enforces it.
“Oh, I get that as well! I just take some paracetamol and get on with it.”
“Man, I would give anything to stay in bed all day! Nice life, isn’t it?”
“Can’t you just think positive about it?”
“Don’t you think you’d feel better if you just came along for a bit?”
“So you’re off work but you’re still going to that other thing? I thought you were sick?”
“You don’t look too bad.”
“You’re just stressed.”
We’ve all had those. Some will have been more painful than others. Some will have caused rage, some will have caused fear, but all of them will have contributed to the lie, and the lie contributes to this thought pattern:
I am sick. My sickness makes me a bad person. I am a bad person. I need to remind myself that I am a bad person. I am beating myself up.
When I do that, I believe the lie. I am telling myself that what I feel isn’t relevant, the pain I’m experiencing doesn’t change the fact that illness is a weakness. At its most abstracted point, I am telling myself that I am lying. That my sickness isn’t real, it is just an exhibition of my weakness. Truth becomes a lie, and a lie becomes the Truth.
We’re all looking for validation in this life. When we suffer, we seek validation in different ways, largely from outside of ourselves. We rely on doctors to validate our pain with a diagnosis. We rely on our community to validate our experience with the appropriate level of support. We rely on our society to validate our pain with care. When our society refuses to respond with care, we remain unvalidated. Our suffering hangs around us, an inconsummate shroud, that forbids us from taking our place in the world and hangs like a judgement seal. Our society does not validate our pain. It takes away care programs, it signs people on for work who cannot cope, it takes people’s benefits, flexible working, and wheelchairs. What can we do?
We can either live invalidated or choose to validate ourselves. Living invalidated means beating ourselves up, allowing other people’s prejudice to govern how we are treated in the work place and the public sphere, and making the space we occupy as small as possible. Living invalidated means having a private illness. It means pretending to be well. Or we can validate ourselves. We can not beat ourselves up. We can start to say that our illnesses, our chronic fatigue, our depression, our bipolar, our MS, our Fibromyalgia, our IBS, our grief, or our other illnesses that has been hidden away do not stop us being contributing members of society with a voice of our own that deserves to be heard. That deserves to be heard even if we have to take sick days. That deserves to be heard even if we have to cancel plans. Our experience, though not “normal,” deserves to be recognised as part of the broad spectrum of living on planet earth. We can validate ourselves by affirming that whilst it is true that we are not physically well, not all the time, that does not mean that the times we are unwell cancel out the times we are well. We can not beat ourselves up.
We cannot beat ourselves up. Not if we want attitudes to change.
So yes, I had an IBS attack during therapy and it was unpleasant.
Yes, I have depression and OCD and today I had a panic attack.
Yes, I have to cancel plans and adjust my work schedule according to it.
But I am validating myself. I did well today. I continued to exist and live with my illness, and having that illness and existing with it is a valid way to live. Because illness is not weakness.
This is going to be a hard blog to write. That’s because this is a hard topic to discuss. Even more difficult than my mental health. There’s only one thing more difficult to talk about than my mental health, and that’s my physical health. Increasingly, however, I live in a reality where one has a huge impact on the other. Because I have (take a deep breath) …. I have irritable bowel syndrome.
Ugh, it just sounds gross, doesn’t it? I don’t know if it’s just being British, but the idea of having a condition that has the word “bowel” in it is just beyond offensive. It’s not just icky sounding, it’s icky in reality – people with IBS have the joy of a thoroughly unpredictable stomach. My partner and I often use trains as a helpful euphemism, (because we’re too British to say poop), and IBS can either mean that the trains hardly ever show up, or that your small intestine is the equivalent of Euston station on a Saturday, fully equipped with high-speed rail. With either version, one can expect cramps for days, back pain, gas, and all those other delightful symptoms one might associate with an aggressive bout of food poisoning. Full disclosure, I have the second type. With all of that, you have to thank God for abbreviations. I stick with “IBS” usually, and thankfully, most people know what I mean. Not surprising really, considering it is the reason most people go to the doctors every year. I find though, that when I reluctantly admit it in public, whilst everyone has the knowledge of it, like a dirty, horrible secret, nobody really wants to talk about it. I don’t blame them! I don’t want to talk about it!
So why am I talking about it? I blame my therapist. My therapist has been challenging me to “out” myself in situations as part of my therapy, making me understand that the pressure to keep my obsessive-compulsive disorder a secret from the outside world is only giving it more power. As a blogger, outing myself is sort of my gig. However, today I challenged myself to talk about my IBS. The one thing I dread to talk about, the ugly secret of my life that I am constantly quietly managing, desperately hoping no one notices how long I spend in the bathroom, how my face muscles contract in conversation as my stomach is full of cramps. The last thing I need is to give my IBS more power, and if hiding from it is doing that, then consider me out of the closet.
You might be thinking “Hang on! your IBS is a physical condition; how can you give it more power or less power?” Well, that’s the extra fun thing about IBS – it’s one of those hard to diagnose, sneaky illnesses that often come part and parcel with mental health problems. Along with M.E, chronic fatigue, and fibromyalgia, IBS patients often have pre-existing mental health problems, and thus, the diagnosis of these issues becomes more complicated. Because if you are an anxious person, how can a doctor work out what percentage of your symptoms are from your anxious brain constantly telling your body you are under threat and to respond in kind? Well, I wish I could say there was a test. Like all of those other illnesses I mentioned before, there is no positive test for IBS. There is just a serious of negative tests. Do you have bowel cancer? Do you have endometriosis? Do you have leaky gut syndrome? Do you have Crohn’s disease? No? Well then, you’ve probably got IBS. The spectre of mental health carries over into the treatment too. At every turn, there is a question about the validity of your experience. Not because doctors are evil and don’t understand, but because they are trying to be accurate about an incredibly inaccurate area of diagnosis. Even today, speaking with a doctor who is incredibly understanding and helpful, I was reminded that people with mental health problems tend to experience exacerbated pain and symptoms. In the cruellest terms possible, the question a doctor will need to find an answer to when they are presented with a mental health patient with abdominal pain is: “How much of this is all in their head?”
It is very much not all in my head. It’s in my stomach, my abdomen, the back of my legs, my lower back …. but it is also in my head too. How irritating! But there’s the rub. Having an IBS attack makes me anxious. When I am anxious, I am more likely to have an IBS attack. There is part of that which is natural – all of us might get a dodgy tummy before a big meeting or when a gun is held to head, and after a night with your head in the toilet, you might also find yourself anxious and a little bit depressed – but my reality is so far from those natural moments we all experience, and that is the reality of which I have been ashamed.
I cringe when I have to send family and friends a long list of things I can’t eat before I visit (in the last few days I haven’t been able to stomach anything other than cooked rice!), wishing that I could be a simpler guest. I dread going out to dinner because I know that my anxiety about not knowing exactly how the food is prepared will follow me well into the night. I flush with embarrassment when I trot out an order that makes the waitress sigh with annoyance. I plan in my head if I have the right medication at home and the time the next day to be ill if I get sick following the meal. It’s humiliating to have to leave a small, crowded theatre in the middle of a show and beg the ushers to let you back in. It’s mortifying to have to go backwards and forwards to the toilet on a plane whilst the seatbelts signs are on, clambering over the man in the aisle seat, and feeling embarrassed as you pass, multiple times, the people sitting beside the toilet and the resulting smell. I get embarrassed just writing it! What does this embarrassment mean? It means I don’t leave the house without appropriate medication. It means I often work from home and have to cancel work engagements. It means I don’t eat out anymore. It means I always know where the toilets are. It means long journeys make me nervous, I don’t eat before films and theatre (just in case), and every day I wonder if I’m going to get caught out today. It has happened. It is mortifying.
But…. is it more mortifying because people don’t talk about it? Would it be easier, less stressful, and less anxiety-inducing if I could just turn around to a waitress and say “I have IBS – sorry about the list of “no-no” foods, but I don’t want to spend all night getting intimately acquainted with your toilet facilities!” Maybe if I could do that, and become less stressed about it, less anxious about how to manage it in public, it might go a long way to helping the symptoms. It’s unlikely that I will have IBS all of my life, and it’s important for me to remember that. No matter what it feels like, (and it has been about 3 years now), the stats are on my side for making a recovery someday. However, I don’t know how long the wait might be, and continuing to tiptoe around my gut isn’t good for my brain, so I’m taking a gamble on breaking the taboo.
Let’s talk about poop. Let’s talk about how it really feels to live with a chronic illness. Let’s talk about muscles that won’t work and nights on the toilet, about chronic pain and not being able to get out of bed, whatever you’ve got, let’s have at it. If being honest about our aches and pains might help us, then that seems worth a shot for me, and for others like me. So that’s what I’m doing. Starting a conversation about something that humiliates me, something that stresses me, in the hopes that by talking about it, it will become less humiliating and less stressful. As it becomes less mentally stressful perhaps, just maybe, it might just become less physically painful…
And then I might be able to eat something other than rice!
If you want to chat, please do get in touch. Let’s talk about our embarrassing bodies together!
“My name is Emma, and I’m here to talk to you because it’s mental health awareness week.”
I take in the sea of young faces before me. I feel the heavy drum of my heart against my chest wall, observe the questions in some of their eyes, the laughter in others.
“I’m here to talk to you because I have a mental health disorder.” I take a breath. “I have an eating disorder and OCD that manifests itself in anxiety. This is a very important week for me.”
This is not the first time I have stood up in front of students and said some version of these words. It will not be the last either, but every time I do it, I feel the same things. The slight edge of my panic growing. The annoying tremble of my voice. And the shame. The corners of an old shame that I catch my heart on. That shame makes me hang back, pause for a moment, and think: do I really need to do this?
Then I watch the students come in. I watch their faces as they watch our video and see the stories of people who are just like them with a mental health diagnosis. I scan the room for that look, that familiar look that one mental health sufferer can always spot in another: the tensing of the shoulders and the biting of the lip. These are the tell-tale signs of a hidden shame.
Yes, I think to myself. Yes, I do need to do this.
This week I am doing a mental health project in a school for mental health week. My story is an important one for young children to hear – it tells them that they are not strange or weird and that they have company in whatever shameful place they might feel they are in. However, mental health awareness week isn’t just for young people, even though that area of awareness is my passion. My own life is evidence to the fact that mental health problems that exhibit in young life often will carry into adulthood, and so this week I am writing here about adulthood and mental health. I am challenging myself to write every day at the moment – some of that might be here, some of it might not, so forgive me if there is not a post for every day of mental health week. I promise you at least one at the beginning and one at the end. But like all things, I am taking each day at a time.
So what do I have to say about mental health today? Well, I have this to show you.
This may not look like much. Just another form or questionnaire. But this is my most recent GAD 7 scoring and PHQ 9 scoring. These are a Generalised Anxiety disorder assessment and a Patient Health Questionnaire which is used to measure the severity of depression. They show that I have moderately severe anxiety and moderately severe depression. They also show improvement. When I first did these assessments in December/January, my scores were much higher. Both closer to twenty. Now, I have moved down a whole category of severity, and on my PHQ 9, I am close to moving down two.
This is a triumph of a few things: a triumph of medicine, a triumph of a targeted therapy specific to my temperament and illness, but also a triumph of awareness. Since coming to a significant low point in December that prompted me back into therapy and into the psychiatrist’s office, I have become steadily more aware of my own mental health. This probably sounds insane, after all, I have a blog about mental health and I deliver mental health projects regularly in public forums. So how could I possibly be more aware?
Well, the answer comes from diagnosis and education. My journey over the last six months has shown me just how important and accurate and educated diagnosis is. For the last six years, I have had a certain idea of what my brain was doing to me. I had been told that I had depression with anxiety. I was given to understand that my brain had an enemy living inside it that needed to be fought back with medication, good habits, and a positive mindset. This, unfortunately, is like telling a cancer patient that they should probably have some radiology and chemotherapy and hope for the best. I hadn’t understood until now how similar a psychiatrist is to an oncologist. It agonises me to say that this is one area where mental health patients are being failed by the public system. It is difficult to get on a waiting list for a psychiatrist, and it is a dangerously long wait time. Even if one gets an initial appointment, it is hard to get a booking to see someone as regularly as you need. This is not the fault of anyone actually providing the services – they just are incredibly over-stretched. This is one of the great tragedies of our age and our health system. I am fortunate to be able to pursue alternative options.
And what have the other options given me?
Understanding myself as a person with OCD and understanding that OCD emerges often from a pre-existing temperament has been both painful and freeing to me. Painful, because when I asked my therapist honestly if I would ever be “different”, he explained to me that I have a temperament that leans towards over-control. It is part of who I am. This caused a lot of crying. A lot of ugly crying. Yet, it is also freeing. For the longest time, I have seen myself as the enemy. This new information frees me to the new possibility that whilst I will always have an over-controlling instinct, it can be a positive thing. People who are over-controlling might manifest OCD, but they can also achieve amazing things with their dedication. What this means for me is that I am not inherently wrong. It could be different. The thing that causes my OCD can be re-trained, re-wired to be something great in my life. Basically, the instinct to be obsessive or compulsive doesn’t have to be a disorder.
This, for me, is why awareness is so important to me. I am becoming more and more aware of who I am, and how my mental health is not a gremlin squatting on my brain, but rather a series of complex neurological instincts that need to be given a break. They don’t know they’re hurting me. They’ve developed a pattern that they think is saving my life. My brain is not against me, my brain is neutral. My brain needs some re-wiring, but it doesn’t need to be told it’s bad or wrong or shameful. It’s a brain. It can’t be those things. This is something I have become aware of, and because I have become aware of it, my scores have gone up.
In other words, awareness is helping me heal.
So this is what I tell myself when I watch the young people file into assembly every day. This is what I tell myself when I stand in front of a class of rowdy year eight students, or when I sit with a group of year six girls, or when a child asks me about my mental health status. I tell myself I am giving them knowledge, giving them insight, and making them aware of what mental health really is. I tell myself that if awareness is helping me heal, then it might help them too. I tell myself that awareness could save a life.