‘It must be stress’. The doctors made me feel I was making things up. This was all in my head, and I’m just wasting their time.’

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“The joys of having an invisible illness means I often hear the phrases ‘you don’t look sick’ or ‘you look fine to me’. I first started to experience symptoms in 2006 of which I was repeatedly told by the doctors that my symptoms were due to ‘stress’ or ‘the lack of fibre in my diet’. Making the effort to eat more fiber, get more sleep and reduce stress – which was hard for me at the time due to school exams and university applications – I hoped that my symptoms would resolve themselves and I could go back to my ‘normal’ life.

Man with invisible disease sits on step outside
Courtesy of Ziyad Al

But little did I know that my life would never be ‘normal’ ever again. More visits to the doctors just made me feel that maybe I was making things up and that this was all in my head and I’m just wasting their time. ‘It must be stress’. I did start to notice that every time I ate something, a few hours later I would experience some form of pain in my stomach. I started to develop such a negative relationship with food which meant that I started to skip meals or just wouldn’t eat that much in the hope that I wouldn’t experience any pain. This was probably the point when people started asking if I was OK as I didn’t look well because I started to lose so much weight and resembled more of a ghostly figure than the healthy 17-year-old I once was. I kept things to myself at first but my family were among the first to notice that something wasn’t quite right with my health. They were very supportive in taking me to doctors appointments and trying to make things as less stressful as possible, but they were also concerned and how quickly my health was declining.

Man with invisible disease sits at table with tea cup in front of him
Courtesy of Ziyad Al

My symptoms gradually got worse and worse where I would be up all night either in constant pain, feeling sick and being sick as well as constantly needing to go to the bathroom. Worse thing was at the beginning I would be suffering in silence as I didn’t want to wake anybody up and bother them with what could have just been a stomach bug or the consequence of eating a dodgy burger from a fast food van. It was only when I started to notice that my trips to the bathroom were accompanied with heavy bleeding that I started to question that maybe something more sinister than the ‘lack of fiber’ in my diet was the cause. These rough nights were never a one off. It was as if I was experiencing the same cruel joke on a nightly basis. Pain, vomit, bleed repeat. Going through this every night for almost a year really took its toll on my body. I would end up missing a lot of school due to shear exhaustion of trying to maintain appearances and have some kind of social life. During these repeated episodes my family would hear me at night and so it was hard to keep it hidden anymore and the hope that these symptoms would go away was fading fast. I never told any of my friends or my school teachers about what was going on with my health because I wasn’t sure what was going on and felt too embarrassed to talk about it with anyone.

Visiting the doctors again where I explained my new symptoms as well as them clearly seeing that I was a shadow of my former self, I was finally taken seriously and referred to a specialist for tests. It has been twelve years now since I received my official diagnosis and I can still remember the nervousness of waiting to see the specialist to receive my test results. I was physically and mentally drained but worse of all I was emotionally unprepared to hear the words ‘you have something called crohn’s disease’. Well there it was. I finally had the answer as to what was causing all my symptoms. In truth it was a big relief to finally put a name on the cause, but this was short lived as the reality of my crohn’s journey started to sink in. Firstly, what was crohn’s disease? How did I get it? What do you mean there is no cure? What do I tell my friends? Should I tell my friends? What’s going to happen now? These were just a few of the questions that were racing through my mind but the one question that get playing on my mind was ‘Why me?’. I was afraid of telling any of my friends out of fear of how they would treat me or if they would make a joke out of it. I’m completely fine with making fun of my condition now as it does help to lighten the stigma around it, but back then I wasn’t. It wasn’t until my second year at university when I decided to tell some of my closest friends that I had Crohn’s. In truth I didn’t make a conscious decision to tell them, but it somehow came up in conversation and I just felt comfortable enough telling them. It was actually a sense of relief to get this secret off my chest and finally give them the answers to why I cancel plans at short notice or if I don’t turn up to class. They were very supportive which I am grateful for.

Man with Crohn's disease smiles in selfie beside two of his girl friends who helped him get through it
Courtesy of Ziyad Al

How does that saying go? ‘Throw it against the wall and see what sticks’. Well that’s pretty much how it felt when I started treatment. The unfortunate thing about having inflammatory bowel disease is that what may work for one person, may not for another and so the not so pleasant method of trial and error is used. It felt like I was being put on every medication under the sun which included antibiotics, steroids, aminosalicylates and immunosuppressants. As time went on and I started to achieve some form of remission I had to address the issue of my weight. With all the medication I was on I never really had much of an appetite and still had such an unhealthy relationship with food which is why I had to see a dietician. Here we discussed ways of trying to increase my weight and identify possible trigger foods, but it wasn’t until the time of my colonoscopy where it was decided to give my bowel a break and start on a liquid only diet. I was put on a liquid diet where I could have nothing but these specially formulated drinks as well as the odd cup of tea for six weeks. To be fair, the drinks came in different flavors and didn’t taste all that bad, but it was so difficult trying to live life as you never realize everything you do revolves around food. Looking back, this repaired my relationship with food as when I could reintroduce food into my diet I would start trying different foods which I remember looked good during my time on the liquid diet. However, I wasn’t out of the woods yet. A little way down the line I developed two intestinal strictures one after the other which required separate surgeries. Although the physical scars have healed the mental ones remain as a reminder of how bad things can get. It felt like all the progress I made was for nothing due to having these setbacks in such a short space of time after each other. I had mixed feelings at this time. There was the side of me that would say ‘keep going, things will be fine and this round of medication will be the one that works’ but it seemed that the voice in the back of my head that kept saying ‘there is no cure so what’s the point of these treatments?’ seemed to never go away.

Man with Crohn's disease wearing scrubs stands taking mirror selfie
Courtesy of Ziyad Al

It’s been years since my last procedure and while I’m lucky enough to be in remission there was one thing that would never leave me. The embarrassment of having inflammatory bowel disease. I’ve only ever told a few of my friends about my crohn’s which I was glad to as I could develop a support system which included them, but more recently I decided more needs to be done to help remove this embarrassment stigma. So I started to blog and share my experiences with crohn’s and have been overwhelmed by the response I got from my friends when I public announced my disease on social media. Receiving messages of support and comments saying that a family member also has it and that they can partially understand what it’s like wanted me to do even more. While I tried out a few different Instagram names I finally decided on The Grumbling Gut, as what else could describe my crohn’s disease more perfectly than that!! With this new identity I dedicated all my social media pages to providing education and support for people with inflammatory bowel disease and other chronic illnesses in the hope to raise awareness and show that not every disability is visible. Since blogging about my experiences, I get loads of messages asking more about my experiences and what I have been doing to remain in remission. But I think I get the most out of the messages from people who just need someone to talk to who can actually relate what they are going through and not just give the generic ‘oh that must of been awful for you. Hope you get better soon’ response. I have made many new friends over social media and has provided me (and hopefully others) with online support because sometimes at the end of the day all you need is someone to talk to.”Man with Crohn's disease smiles in selfie at restaurant table with friends

This story was submitted to Love What Matters by Ziyad Al. You can follow his journey on InstagramDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

Read another inspiring story of overcoming invisible illness:

‘She’s just a nervous child.’ The words still burn. I was 13, about to start high school. But I was different. My life was consumed with excruciating pain, diarrhea, and the toilet.

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