• chronicloveclub

Don't Let Your Fears Keep You Quiet

By Ziyad | @TheGrumblingGut | CLC Science Contributor | June 3, 2019

Don't let fear keep you quiet. You have a voice so use it. Speak up. Raise your hands. Shout your answers. Make yourself heard. Whatever it takes, just find your voice, and when you do, fill the damn silence."

Those words were spoken in an episode of Grey’s Anatomy by Meredith Grey and I couldn’t have put it better myself. I was officially diagnosed with Crohn’s disease in 2007 having spent the previous year experiencing symptoms and not knowing what was going on. Sitting my A levels at the time was stressful enough without having to deal with the constant interruption of symptoms, hospital appointments and the side effects of medication. My absences from school - and to some extent my social life - didn’t go unnoticed either and whenever asked as to where I was or if I had to cancel last minute, I'd just give my standard air tight excuse of "something came up last minute".

Truth be told, I wasn’t ready to tell anyone outside of my family about my diagnosis, so I did the only thing I could – keep it a secret. I was afraid of what people might say, what they might think of me or if they might start treating me differently - I didn't want to be anything other than the supposedly 'healthy' 17-year-old with a 'normal' life. As a result, I spent most of the odd twelve years living with Crohn's being so embarrassed about it because let's face it, talking about your bowel habits isn't the most glamorous topic. If we fast forward to now and having gone from being so secretive about my IBD to talking about it so openly and sharing my experiences through social media - you may ask "what's changed?".

The answer is simple - I'm not afraid anymore. I refuse to let fear keep me quiet.

It took me a long time to realise that not only do I have voice, but I could use this voice and speak up to beat the stigma that held me back from sharing my story for so long. But I also believe there's no point of speaking up if my actions don't match what I'm trying to achieve which is why I started to volunteer for Crohn's & Colitis UK, the charity giving a voice to people with Crohn's or Colitis.

Anyone that has IBD knows the impact it can have on your daily life, but my IBD helped shape my career. Having spent a fair share of my time in hospitals being a patient, I got used to the hospital environment and now work as a diagnostic radiographer. Becoming a radiographer wasn't the original plan which is strange seeing as my IBD exposed me to the radiography profession early on having all my x-rays and MRI scans done to diagnose and monitor my disease. Shortly after being diagnosed and referred to a specialist I started the pleasant journey of getting treatment for my Crohn’s. As everyone and their IBD is different, some medications may work for some and won’t for others so at the time there was a lot of trial and error and it felt like ‘let’s throw what we got at the wall and see what sticks’. Some of these treatments would make me feel even sicker due to the side effects and it really did feel like I was being treated as a list of symptoms and not as a person. Long story short, I changed specialist 3 times before finding one who treated me like a person not only listening to what I had to say but took an interest in my social and academic interests and how any treatments may affect those.

Having experienced this first hand has given me incredible insight as to how to provide better care for all the patients that I encounter on a day to day basis.

The one thing I try to do is give my patients the opportunity to speak up, use their voice and be heard because of what I went through in the early stages of my IBD diagnosis. It can get busy in hospitals especially with the increasing patient load and shortage of staff and it can be so easy to fall into the 'conveyor belt' motion of one in one out to try and manage the workload. But it is in these busy moments where taking a few extra seconds to ask a patient who looks upset, scared or frustrated if they’re OK.

The simple words of “are you OK” can make such a difference especially in busy moments as because it makes that person feel valued, they can see that you are busy, but they also see that you have found the time to sit and listen to them. It makes them feel like they also have a voice and that they are being given an opportunity to be heard and express themselves making them feel like they are not just a number on a request form but a person. I've learnt that it is the little things that have the greatest impact and in which people remember. These actions can be anything from taking the extra time to ask someone how they really are if they look or even offering to make a cup of tea for them.

It's no doubt that life will throw you some challenges which can make things tough. But if there is one thing to take way from this it this: No matter how tough things get, always find the strength to speak up because keeping all that inside you won’t do you any good. The more you speak up and share your story, the more likely you will inspire someone else to share theirs.

By Ziyad

Instagram: @TheGrumblingGut

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