#BreakTheSilence for World IBD Day: The importance of sharing your story
Whatever your age or background, understandably any illness can influence your well-being, as well as affecting those around you. It’s important to understand that chronic illness isn’t just physical, it is mental as well and people often go through stages of denial, poor self-image, feeling overwhelmed and feeling in a dark place due to the symptoms of having a chronic illness.
I have had mental health problems since my early teens and having Inflammatory Bowel Disease has impacted my well-being. On the one hand, it is a big contributor to having depression and anxiety, but on the other hand, it has enabled me to develop a lot of resilience & coping strategies over the years as to not be completely consumed by it.
There have been times where I have felt completely consumed by both my Crohn’s Disease and mental illnesses. I would not wish those times on anyone. For the first week after my ileostomy surgery in 2011, I was definitely at one of my darkest places mentally & I begged to die. Most of this was caused by being sick. I have always had a huge phobia of being sick and this is always something I struggle with mentally.
There have been so many tough times, but I’m here to tell you that myself, and you, have survived 100% of our bad days so far & that that week especially after my surgery was a small price to pay for the life my stoma has given me.
“Why do I share my story?”
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There are many reasons I have for sharing my story, summarised by this recent reel on my Instagram.
– In the hope that it gives others hope & to be the person I needed to see when I was younger
7-year-old Amy who had just been diagnosed with Crohn’s Disease, 17-year-old Amy who got told she had one of the worst cases of Crohn’s her consultant had ever seen and 19-year-old Amy who just came out of stoma surgery found a lot of hope and strength to carry on from the few stoma stories she had read. Those stories, and being helped by my Uncle who had a stoma, enabled me to see that there was hope & I was going to get stronger & start to live.
If my journey can do that for someone else, then this is a lot of what drives me to do what I do and share my story, educational posts and tips for living with a chronic illness and stoma.
– To reduce potential stigma
I say “stigma” because I feel a lot of things associated with stigma come from curiosity and/or lack of understanding. Awareness leads to understanding & understanding then hopefully leads to more representation. We shouldn’t ever have to feel like we need to hide our stories & unfortunately a lot of people still do, which is another reason why I’m so vocal about mine. If you aren’t vocal out of personal choice, that’s your prerogative & definitely not one to be frowned upon. Your journey = your feelings & choices. ⠀
I knew when I was ready to share my story. I just had a gut feeling (pun intended) that it was the right thing to do and my motive has always been to help others so they at least know someone has experienced some of what they are going through, still does experience their bad days but is still fighting. Through years of having Crohn’s and my ileostomy, I can hopefully use the tips I have learnt to help make someone else’s journey that little bit more manageable and the light at the end of the tunnel brighter.
– To use my passion to highlight chronic illness reality
I am a big advocate of sharing both the bad and good parts of living with a chronic illness. Often on social media, it is a highlight reel of what we want people to see. I feel it is so important to show the realness of everyday life with a chronic illness and by showing my vulnerability and low moments, hope that it will show others that they aren’t alone in experiencing these times.
Whatever illness or degree of illness you have, it is valid. You don’t need to justify your illness to anyone or feel like you’re not valid because you haven’t experienced things others with it have. Everyone’s story is different.
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