“When I was 7 years old, I was diagnosed with a life-long, chronic, autoimmune disease called Inflammatory Bowel Disease (IBD). My journey with the disease started when I suddenly developed unbearable tummy cramps, diarrhea with large amounts of blood, fatigue, dramatic weight-loss, and lack of appetite. The list goes on. As a child, I was confused…maybe it was just a tummy bug? How do I explain what is happening to me? My symptoms kept getting worse and I began to develop an ulcer in my leg due to my deteriorating health. This formed a hole in my leg that was so deep my bone was exposed.
I was unable to walk, I had to be carried everywhere, I was utterly exhausted from my trips to the toilet which occurred about 30-40 times day and night. I was in unbelievable amounts of pain, and I was too sick to understand what was happening. I remember the car journey to the hospital; I was so weak, but I vividly remember the sick feeling in my tummy, worrying if I would make it to the hospital without needing the toilet. I was going in and out of consciousness, my dad carried me into my appointment where I was immediately admitted. The doctor told my parents that if 10 was dead, I was a 9. This is no fault of my parents, IBD can come out of nowhere and progress extremely fast.
I ended up staying in the hospital for a month. I remember every time the nurses had to change the dressing on my leg I would scream and scream and scream for somebody to help me and make the pain stop. I can’t even imagine how traumatic it must have been for my parents to see their child in such a state. I was so weak I needed a wheelchair to get around. I was on such a high dose of steroids I suffered from severe insomnia and was thankfully blissfully unaware I was rocking a ‘moon face.’ I was very close to losing my bowel and I clearly remember the day my doctor came in and took my mom to the side of the room and told her they may need to operate.
This operation would involve removing my large intestine and connecting my small intestine to my abdomen, where I would pass feces into an ostomy bag. I was a very stubborn child, still am a stubborn adult, and was totally adamant I would not get the surgery. The doctors said they would try one more medication before considering the surgery. I didn’t really understand what was happening and was terrified that if I fell asleep, I would be taken into surgery and would wake up with a bag. Thankfully, due to the amazing staff in the children’s hospital, I began to slowly recover and was allowed home, bowel intact. Little did we know, this was just the beginning.
At home, I suffered strongly with side effects of the steroids. I would hallucinate and experience strong intrusive thoughts, but I was absolutely petrified to mention it to anyone, let alone find the words to explain it. I also left the hospital with constant anxiety about needing the toilet, something which I still struggle with, along with many sufferers of IBD. IBD is a progressive disease in which the immune system attacks the large colon, resulting in the formation of ulcers. I was diagnosed with Crohn’s-Colitis, which is a mix of Crohn’s Disease which can affect anywhere along the entire digestive tract, and ulcerative colitis which can affect the lining of the entire colon. There is no cure for IBD, but the condition can be managed with various medications that suppress the immune system. IBD can vary in severity with some people having mild disease, which can be adequately controlled with medication or diet, and others like myself having severe disease which is hard to manage and can result in a daily symptom burden.
I have been in and out of the hospital many times since my IBD journey began. Recently, I was diagnosed with perianal Crohn’s disease, which has dramatically affected my quality of life. I developed a large abscess last summer which quickly turned into sepsis, a life-threatening infection. This abscess led me to develop a fistula, which is a tract that forms from the colon to other parts of the body (in my case, the opening of my skin) and a fissure, a tear in the anal canal which exposes the underlying muscle. Both led to unbearable amounts of pain. These conditions are very rarely talked about due to the embarrassment and stigma associated with them, something I would love to help break!
There have been too many times to count where I have been judged for using an accessible toilet or have been refused to use a toilet despite me explaining my medical condition. There have even been times where I was mocked for my condition by bouncers and staff, accusing me of faking it. I once produced my urgent toilet card to staff and was told, ‘Do you expect us to believe that?’ These encounters are heartbreaking and really reflect the need for awareness to be spread about these conditions. I think it is especially hard as a teenager/young adult dealing with an invisible illness, as from the outside we look like perfectly healthy individuals and people automatically think we are chancing our arm.
One moment that sticks out in my head was when I had a bad flare up, but had pre-booked tickets to attend a Drake concert with my friend. I was so excited to go, I was not going to let a flare up stand in the way! Halfway through the concert, I got a sudden bout of painful tummy cramps and knew immediately I had tops 1 minute to get to a toilet! My friend and I ran to the toilets, and I was completely panicked to find a queue of about 20 people in front of us. We raced to the security guard, desperately asking where the accessible toilet was, explaining I had IBD and needed the toilet urgently. The guard was immediately judgmental and told us there was no accessible toilet, something every building is required to have. I was close to tears, so my friend ran over to another security guard and was met with a similar answer. By this point, I was so desperate for the toilet my friend took me by the hand and brought me to the front of the ladies’ line, explaining to the girls along the way I had a medical condition. I am so lucky to have such wonderfully supportive friends who speak up for me when I am at my most vulnerable. It is so upsetting explaining the most vulnerable part of your life to someone and have them not believe or support you. I feel so terribly for anyone who has ever experienced something similar. I love the quote: ‘You never know what someone is going through. Be kind. Always.’
IBD has given me a huge amount of empathy and drive for life! It is a constant reminder that nothing in life is guaranteed and I feel so lucky that from such a young age I learned to live every day to the fullest and to not take anything for granted. I strongly believe the only limits we have are the ones we put on ourselves. Just because I have a chronic illness does not mean I can’t live a happy, long, fulfilling life! My illness has made me so resilient, and as my mom says, I am the queen of getting knocked down and getting up again! But this is just the journey of life; if we don’t struggle then we don’t grow! If we all lived perfect lives, we would never learn to appreciate all the best bits in life and I really think living with a chronic illness has allowed me to appreciate every part of my life so much more. This past year and all the pain it has brought has really cemented the fact that how much we have in life does not determine our happiness, instead it is all about appreciating life’s little moments.
To anyone struggling with chronic illness at the moment, I am thinking of you. I think we have two options, we can either let our illnesses break us or we can become stronger, more empathetic, more determined and driven. I think acceptance is essential for moving forward and making the most out of your life. My favorite acceptance quotes are, ‘For after all, the best thing you can do when its raining is to let it rain’ and ‘Acceptance doesn’t mean that life gets better; it just means that my way of living on life’s terms improves.’ Counselors and local or online support groups can help with this and allow you to connect with people going through the same thing.
Putting yourself and your health first is essential! You cannot pour from an empty cup and make yourself your number 1 priority; filling your cup up first will allow you to be the best version of yourself for other people. Look after yourself, treat yourself, spoil yourself, you deserve it! I would also recommend finding gentle, relaxing hobbies you can do during flare ups such as drawing, piano, reading, researching, etc. I love listening to light-hearted, funny podcasts on my bad days. I also have a pile of self-help books I reserve for periods of bad health that I can delve into to keep me positive and feel somewhat semi-productive.
For those who have not experienced chronic illness, my only advice is to be kind, understanding, and just listen. It can mean the world to someone when you lend an empathetic ear. Always remember you have no idea what anyone is going through, so always be kind! To all the chronic illness warriors, you are amazing! Sending love and positive thoughts to anyone who needs them right now.”
This story was submitted to Love What Matters by Christine McCaffrey. You can follow her journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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