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.