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Hello! Shira here! Today we’re going to hear from Cyrene.
I discovered Cyrene on instagram a few months ago. There, Cyrene runs an account called @diaryofacrohnie_ where she speaks out about chronic illness and mental health in a way that is open, honest, and compassionate. I was really impressed by the passion she has for advocacy and the sincerity with which she advocates. I asked her some questions about stigma, OCD, and how her chronic illness has been affected by it.
Here is what she had to say:
Can you tell us a bit about yourself?
Hello! My name is Cyrene, I’m 23, and I live in England. I am an Early Childhood Studies graduate, and I’ve only ever worked with children.
I am what you might call a “professional patient.” My illnesses have caused my life to stop in the last 18 months, but I still advocate on Instagram. There, I raise awareness of chronic illnesses and OCD, help others, and get support for my own struggles, too. I’m passionate about writing because it is therapeutic for me, and helps others feel less alone. I have lived in the same home my whole life, and a lot of my extended family are right nearby, which I love.
You recently started a small business, CJ’s Study Skills. Can you tell us about the business and why you started it?
The aim of my new business is to support students to build their study skills by offering one-on-one sessions, proofreading their essays, and offering free tips on social media. There is also so much more I want to do with the business in the future.
I started this business because I graduated with a First (ed. note: In the British education system, this is like graduating with highest honors), and recently one of my friends asked me if they could pay me to be their study skills tutor. As I thought more about this, I realised that I had real, communicable skills and habits that got me my First, and that I could pass these on to other people to help them reach their full potential.
Also, because of my illnesses, I would love to build a life where I could work from home and set my own hours, because my body is very unpredictable and this would help me a lot.
Tell us a bit about your experience with OCD. When did you first begin exhibiting symptoms?
Through therapy, I have realised I showed many symptoms in childhood. But my OCD began to have a huge impact on my life when I was 17. That year (2014), my family experienced many bereavements. My mum was ill, and I got very sick, too. I believe all of this triggered my OCD to start properly. I began constantly worrying and obsessing over the possibility of myself and my parents dying.
The first big symptom I remember is being constantly convinced that I was dying, and that my next birthday would be my last. I felt this way for years, and of course this wasn’t helped by the symptoms caused by my physical illnesses. I would have awful intrusive thoughts about the horrible things that could be going on inside my body, or accidents that could happen to me that would kill me. I would have images of my parents grieving, and then I would feel shame for making them feel that way.
I also have an obsession with the idea of my parents dying. Similar to myself, I am constantly convinced that their next birthday or Christmas would be their last. I never properly enjoy special occasions or even little joyful times we have as a family because all I can think is that one of us is going to die. I have to remember every detail of every good moment we have, because I “knew” we wouldn’t have many more.
My intrusive thoughts are constant, but they can be triggered to get a lot worse by things like the phone ringing, whispering, or someone being on the phone late at night (because these are the things that brought bad news in 2014). My compulsions began as avoidance — avoiding questioning my parents, or doing anything they wouldn’t like, or going against their advice, even if that wasn’t what I wanted to do. I felt intense anxiety and shame if I put a foot out of line, even something as silly as leaving a mug on the counter instead of putting it in the sink. My mind convinces me that if any of these things happened, my parents would die, they would die hating me, and it would be my fault, and I would live the rest of my life feeling that intense shame.
My OCD behaviours grew and grew. I was checking on my parents constantly, spending every waking moment with them, because my mind said that if I didn’t, they would die and I would regret it. When I get horrible intrusive thoughts, I have to cleanse my mind with good thoughts, check on them, and do nice things for them. I could go on and on. I also suffer from contamination OCD, scrupulosity/religious, and “just right” OCD, but they all link with each other.
My contamination OCD links to harm — harm to me and harm to my parents. I always have to pay attention to what people are touching, and I can “see” germs which helps me make sure everything is safe. If I touch something that is contaminated, I can feel the contamination, and I won’t stop my compulsions until it feels right. My religious compulsions are both about morals and about keeping my parents safe. I feel like this is completely my responsibility, and if they were to die it would definitely be my fault.
I also have obsessions linked to times and dates which I think are part of my “just right” OCD — my mind convinces me something bad will happen if I don’t know the date that things have happened, if things aren’t in order (e.g., pictures, this one is quite difficult to explain), if I forget anyone’s birthday or other significant dates, if good things happen on “bad dates,” or if “bad things” happen on “good dates.” See, very difficult to explain! For example, if I swear or do something “bad” on someone’s birthday, I’ll convince myself that I’m a terrible person and I’ll forever remember the date I did this perceived bad thing because it happened on a significant date. I’ll ruminate on it and end up panicking and reassurance seeking.
How long did it take for you to get a proper diagnosis of OCD?
From the day I first went to the doctor, it took less than a month for me to get a diagnosis.
For years, I had assumed the way I felt was normal. Everyone was scared of their parents dying, weren’t they? Everyone was scared of getting sick, weren’t they? Apparently not the way I was. I only realised this at the age of 22 when I watched a documentary called “Anxiety and Me” featuring Nadiya Hussain. As she spoke about the way she would worry constantly about things like someone in her family dying, I felt like she was talking about me.
After this I did some research and thought I may have generalized anxiety disorder. But it didn’t take long for me to realise the behaviours I carried out because of my anxiety were part of it, too. It took me a while to be ready to seek help, but just the realisation that there was something treatable wrong with me gave me so much comfort. I realised I didn’t have to live like this anymore.
It took me another four months to get into therapy, which I’ve been in for seven months, and I am making steady progress.
You have other chronic illnesses including Crohn’s Disease. Have these comorbidities impacted your experience with OCD? If so, how?
My OCD compulsions are very exhausting. I suffer with pain and fatigue as a result of my illnesses, and doing compulsions makes everything worse, but I cannot stop doing it. No matter how I feel physically, I have to check on my parents. I have to do my ritualistic praying. I have to make everything perfect. I can’t just stop because I’m unwell, and that’s one of the most frustrating parts.
Another way my other illnesses have an impact on my OCD is that I cannot control how much my illnesses upset my parents. As I said before, my OCD hates when my parents are upset, and it causes shame if I do something to upset them. Of course if they get upset that I am ill, my OCD tells me this is my fault.
Can you talk a bit about your experience with OCD stigma?
Seeing the way OCD is portrayed on TV and spoken about in the media is very frustrating. Having something that causes you so much distress and suffering diminished to just “liking things to be clean” or “liking cleaning” or an adjective is menacing. But I have tried to learn to educate others, but not stress if they are not open to being educated as it causes me even more distress.
Because of the way it’s portrayed, this obviously works its way into the minds of the people in my life. So I find it difficult to explain to people, including my family. Everyone thinks they know what OCD is, so it’s difficult to unravel those assumptions and misconceptions before explaining what it’s like.
I haven’t told many people outright about my OCD, because when I have, they’ll say “everyone has a bit of that,” or not take it seriously, and OCD isn’t something I can explain in five minutes. It’s difficult having something that causes you so much distress belittled in so many ways.
And the biggest way the stigma has impacted me is delayed diagnosis. Because of the way the media portrays OCD, I never even considered that what I was experiencing could be that, and I’m 100% sure I’m not the only one. This is why I’m passionate about raising awareness.