An invisible disease is one of the hardest things to get your head around.
For me, this is the worst part of the illness. A person passing me in the street cannot see I’m ill or disabled. The girl sat two desks away from me can’t tell how much pain I’m in or how unbelievably tired I am. And you know what, I get it.
I’m currently sat at my desk at work (whoops, shuffles paper/pretends to look at CVs) and I’m in full slap, big hair and conversing as usual. My boss sitting opposite me has no idea I spent until the wee hours of the morning producing what can only be described as poison from my backside and that its particularly uncomfortable sitting in my chair today. He also doesn’t know that I’m having mini panic attacks every time my tummy twinges as I don’t want to produce that evil smell in public.
How could he or anyone know this? Without actually telling him he can never know.
My husband has often commented that my Crohn’s friends are the best looking bunch of sick people he has ever seen.
I have developed a paranoia of sorts because of this illness being invisible. I’ve had stomach problems for as long as I can remember. My mother would take me to the doctors on a regular basis as I would have the runs or pains but the doctor would say it was a touch of IBS or something I had eaten. Naturally. Why would a 14-year-old have a chronic illness?
Developing a mild eating disorder during my teens didn’t help, either people believing I was ill or my yet unknown Crohn’s. From 15 years old the docs could say it was because of the laxatives or vomiting. From becoming specifically ill from around 14 years old it took 6 years before I got anyone to take me seriously. And this included my parents, particularly my dad.
Dad thought I was becoming a lazy teen. There may have been an element of that but actually I was just so tired. With this and my constant running to the toilet after eating my parents were quite understandably thinking I was going through a bad stage. There was lots of arguments and accusations of laziness and ‘not amounting to much’.
But alas, I was getting worse. I couldn’t hold down a job or college because of time off or fatigue. I have a specific memory of my parents taking me to enrol at college yet again and my dad was in a rage. I was so ill, in literal agony. I was sweating but freezing and thought I’d pass out.
I managed to sign into some course, I literally cannot remember which one it was, probably didn’t know at the time, and then I got back in the car. My dad was so annoyed with me and wouldn’t talk to me. I was sat in the back and he drove off over all these speed bumps at the college. With every bump I screamed or winced from the pain.
That night I was in hospital.
However, this is not where it ended. Besides the obvious pain I was in, the consultant couldn’t find anything in my blood tests and sent me home. My mother and I then got into a two-day cycle or admitting me to hospital, staying for a night and then being sent home. This carried on for about 2 weeks. My GP visited me during one of my days where I was at home and recommended that I have a psych evaluation. All because I was terrified and asked him if I had cancer. Not the most helpful at that point.
Anyway, long boring story short, I was admitted to the Women’s Ward after not so elegantly hoofing a doctor in the head. It was a reflex action after touching my tummy. Don’t judge!
I spent a weekend in the Women’s Ward. I was a mess. I was in so much pain. I couldn’t go to the toilet despite really needing to. Blood and vomit was all I could produce. I would sit on the toilet holding my mums hand and scream and cry. I would beg her to take me home as I knew they wouldn’t believe me that I was ill. She made me stay.
On the Monday I was sent for an ultrasound and after going into shock on the table they thankfully found something. That may sound like a strange thing to say, but when you are in pain and ill, to have it finally acknowledged, is a massive relief.
I had passed out from the shock and when I woke I was back on the ward and surrounded by doctors and nurses. They told me they were going to have a look and see what was going on as something, a shadow, was found on my ultrasound. I was prepped for surgery and put on a trolley. I cried the whole way down to surgery, I was so scared.
That’s the last thing I remember.
I came round and my life was changed, forever.
There was a nurse sat next to me and my throat hurt. She leaned over me and told me to cough. She then produced this massive tube which I worked out was coming from my mouth. She put a button in my hand and said press that when you are in pain. Morphine I later realised, not a call button.
I heard my mum coming from down the corridor and then she was sat next to my bed. It was my mum that told me that I had massive surgery and that I had Crohn’s. A surgeon later turned up and told me the same and gave a brief outline of what that meant. I was so drugged I didn’t understand, care or have the ability to take anything in.
The next 8 months was spent in hospital. I’d had just over a foot of bowel removed but I had severe sepsis and a pocket of infection that would not drain. My drain fell out around month 3 and this caused my scar to heal but then build with infection. First occasion of this was the grimmest and most terrifying night of my life. The pain was beyond anything I can describe.
I was given 2 shots of morphine, 2 cups of liquid morphine and Tramadol. I was out of my mind. I had a fight with the nurses, ate toast, talked to a white monkey on the end of my bed and then fell asleep (I think). When I came round I was still pretty out of it but knew I was wet. It was cold and I felt sticky.
My scar had burst open and I was covered in thick yellow/green pus, all over my stomach and legs. It was everywhere. I stumbled up out of bed and wrapped the blanked around and under me like a huge yellow nappy. I shuffled off to the nurses station where I demanded they called my mum and called the nurses every name under the sun. To this day, I don’t know why I was angry with them.
For all I was an absolute shite to them, they put me back into a clean bed and washed me down. They did tick me off for being rude but they could have been much worse to me.
I had the scar bursting experience another 3 times. Each time got less painful, think my skin just got used to it. Around month 6 I had another op where they removed the pocket.
Life when I got home was difficult at first. I wasnt used to doing everything myself. New meds, cleaning my scar and even bathing in general was weird and scary.
My first husband didn’t and couldn’t understand.
Our marriage only lasted another year after I left the hospital. I had tried to go back to work but it was probably too early. I still had the words of my father and ex-husband ringing in my ears. That I’d never amount to anything and that I was lazy.
The doctors had told us it would take about 2 years to get back to normal life and to be honest they were right. But in those 2 years I had lost my husband, my home, jobs, chances of education and friends (who weren’t really friends obvs)
A huge positive was that it brought me and my dad closer together. He was also ill and we now had something we could bond over and he now had a new understanding of what I had been going through. He became my best friend and my biggest cheerleader.
The point, that I will get back to, is that with an invisible illness, no one can understand what you are going through. My parents loved me but even they didn’t believe me. The doctors didn’t believe me. My employers and my lecturers didn’t believe me.
It’s not like I’m going to track them all down just to lift my top to show them all I was telling the truth.
When I have to use the disabled toilet and I get a dirty look, I feel ok. I don’t worry whether that person will think bad of me because 1. I will probably never see them again and 2. I have saved them the un-comfortableness of sitting next to me in a stall and having to inhale my offering to the porcelain gods.
When I am on the beach and I am wearing a bikini top and my scar and stomach flap are on show, I realise that the peepers may possibly have a fleeting thought of ‘what’s wrong with her’ and then they move on.
Just remember people, as all those wonderful memes on Facebook and Twitter say, you cannot judge a person until you have walked in their shoes.
Words by Stephanie Snowdon