Living With An Invisible Illness - Emetophobia
I suffer from an “invisible illness” as I’d like to call it.
An illness that eats away at you from the inside out, an illness that is invisible but that can cause physical issues. No one can see that you suffer from it, unless you let them into your secret, into your world. In some ways, this has been beneficial to me because I can hide how I am really feeling inside when I feel I need to. I can act like I'm okay. It's not a broken leg, so I can hide it. I can pretend. The danger with being able to do this is that I guess I’ve always dismissed it as not being important. However, what I’ve now learned through my experience is that mental health is just as important as physical health. Having a mental illness can be just as consuming as something physical stopping you from doing the things you want to do.
I am going to let you in on some of my story.
I’ve been suffering since I was 8 years old, but only in the last year have I come to terms with it and found acceptance in the label “mental illness”. For years I and people around me had dismissed it as hormonal or "just the way I am" - the way I’ve been processed. Accepting it was a real illness was my first baby step to recovery. But hold on - let’s start at the beginning.
So, my name is Abbie and I suffer with a mental illness called Emetophobia. Emeto-what?! Don’t worry, I get that reaction from most people first time around! In simple words, emetophia is a phobia of sick. If you’re still confused about how someone can have a fear of being sick (I know it’s not something anybody particularly likes!) just know that I didn’t choose it and I don’t know where it came from, all I know is that it developed from a really young age and began to control my life. A short Wikipedia description is:
“Emetophobia is a phobia that causes overwhelming, intense anxiety pertaining to vomiting. This specific phobia can also include subcategories of what causes the anxiety, including a fear of vomiting in public, a fear of seeing vomit, a fear of watching the action of vomiting or fear of being nauseated. It is common for Emetophobics to be underweight, or even anorexic, due to strict diets and restrictions they make for themselves.”
For years, I just thought I had “a phobia” or an irrational fear of sick. I told myself I was being a bit over dramatic (as people would also continuously tell me) until it got to a point I couldn’t physically go out and I was admitted to a paediatric dietarian about my weight. The simple “phobia” had now developed into a serious issue with food, food had become my second worst nightmare. I didn’t want to eat because I’d be plagued with thoughts about being sick, panic about getting food poising or imagining how sick I would be if the food was not cooked properly. This went on for some time and still to this day, I control my food intake due to my phobia. I managed to deal with my phobia to some extent by cutting meat, dairy products, spicy food - anything I believed could possibly disagree with me - out of my diet. This was the way I managed my illness, by controlling every single thing I consumed. I then developed another illness - GORDS (Gastro-oesophageal reflux disease) which caused my phobia to get worse when I didn’t think that was actually possible. Over the next few years, I controlled my emetophobia solely by the way I ate.
I was moving to university which was a huge step for me. Looking back, I honestly don’t know how I did it, I just jumped in with two feet! I knew I wanted more to life, and constantly thought to myself - could it get any worse? Even at this point, I hadn’t accepted anything inside my head was wrong. I still thought it was just a phobia, the panic attacks, the voices promising me bad things would happen if I didn’t restrict myself were all just normal to me now. It was moving to university that made me realise something really wasn’t right. I was around other freshers which I thought I would love but I couldn’t have been more wrong. I personally never wanted to touch alcohol for fear of being sick and rarely want to be around people who were drinking it, just in case they were. University comes with a lot of sick, I can tell you that! I just couldn’t cope with it, everything about sick made my heart go into shock and I knew my panic attacks followed as soon as I’d been triggered. I didn’t want people to judge me or stop spending time with me because of this, but it happened - I lost many people but I also, luckily, gained a few understanding people who will be friends for life.
In my second year of university, things got worse and I ended up isolating myself even more. This led to my anxiety getting to a point that I couldn’t stay in London where my university was located. I realised this was my breaking point - everything I was dealing with on a daily basis wasn’t normal - I had to go home and try to get better. I told myself that by the time third year starts (which was 3 months away) I’d be better, but this is where I went wrong with my illness. I tried to rush my healing, putting too much pressure on myself and then started beating myself up over the fact I couldn’t do the daily things I could before all the anxiety started to get really bad. I was losing friends because I wouldn’t leave the house, I was causing family and relationship problems because I was always down. I didn’t want to do anything and if I did I’d have a wave of anxiety over me and end up taking my make up off and getting back into bed.
It took me a long time to realise and accept I had a problem. In my opinion, this is where you can start to go forward. Accepting my illness really was the start of my recovery journey. I finally went to the doctors who referred me to have CBT treatment. I started to talk about my phobia and the deep and dark times it had caused me - the control over food, the flash backs, the voices in my head that would tell me something bad would happen if I didn’t do something. The counsellor helped me as much as they could. I was diagnosed with emetophobia, post traumatic stress, severe anxiety and OCD around food situations. I accepted this and after my sessions were over, I realised that even the most highly skilled and trained people can’t help me, if I’m not willing to help myself. It was time for me to stop being stubborn and reach out for the life I desperately wanted back. I found a forum of other emetophobs who were suffering with exactly the same problem as me. Who knew thousands of different people all over the world had the same problem that I always thought was so stupid and so silly?! The realisation of this gave me a new wave of hope, just knowing I wasn’t alone.
I’ve realised that mental illnesses are all different and come in all shapes, fears, anxiety and sizes. You might think someone else is going through something worse, or you feel like yours is so silly that nobody would understand (like I felt with mine). However, you still deserve to take the time to listen to your inner self, focus on your mental wellbeing and ask for help. If you're struggling please ask for help or speak to someone just to share your problems. I know it doesn’t always feel like it, but someone is there to listen. We just have to love and respect ourselves enough to reach out.
I came across CrazyCreativeCool last year - their mental health goals journal and this community really changed the way I perceived my illness. I genuinely feel like a weight has been lifted off my shoulders and even now as I’m writing my story, I literally just sighed with relief. Finding someone who is happy to listen, doesn’t judge, helps you grow and really cares is the best feeling! I felt supported and for once, NORMAL!? I also learnt that recovery from mental illness isn’t a race, I would say it's more like a marathon. It’s not about the time you finish, it's about JUST facing the journey - even in the moments you feel like you just can’t do it and want to give up.
So, if you’re suffering with emetophobia yourself or another invisible mental illness, here are my tips based on my own personal experience:
REACH OUT FOR HELP. I had CBT counselling and looked for online support groups to help me start my recovery journey.
ACCEPT YOUR STRUGGLE. Don’t lead yourself to believe that your problem isn’t a real problem. Acknowledging what I was going through and being ready to change / heal is was what saved me from getting to an even darker place in my mind. It helped me to really commit to my recovery.
PRACTICE GRATITUDE. I now evaluate what I have to be grateful for, instead of focusing on the things that are bringing me down and causing me to feel sad or negative. One thing I do now which really helps me, is write down a few positive things that have happened each day, plus some things I haven’t been happy about. I observe this list and think how I can replace the negatives tomorrow with more positives. Using a gratitude journal and diary to change my perspective are really helpful to be kinder to my mind.
HELP OTHERS. I take time to listen to other people and have a shoulder for other people to lean on, because I know how much it helped me.
DON’T BE TOO HARD ON YOURSELF. I have days where I slip up but I don’t let these (as CrazyCreativeCool taught me!) distract me from the progress I have already made. Always pick yourself up and try again.
DON’T TRY TO DO THIS ALONE. Finally, please don’t suffer in silence! If something is causing you unhappiness, it’s not silly or stupid. There are people in this world who can listen to you and help you to heal. Together we can halve problems by sharing them. Your journey is important, as well as your health and happiness.
Thank you CrazyCreativeCool, for helping me to build the strength to not take off my coat and settle in the place I was. I’ve grown into a better person, which resulted in me being in a much better place mentally. This community is a great space for creative women to come and connect about mental wellness, health, self improvement and everything in between!
“What makes me crazy?
The constant thoughts that I’ll never be good enough.
What makes me creative?
I can express myself and how I’m feeling that day in an outfit. Feeling lazy.. I’m gunna wear my pjs out.. feeling sassy I’m gunna wear a floor length pink fur coat to Tesco.
What makes me cool?
That I haven’t given up with everything that’s been thrown my way, instead I’ve turned it around and created a positive and kept going!”
Words bravely shared by Abbie Perkins (@abbieperkins)