When I Realized My Crohn's Diagnosis Doesn't Mean My Life Is Over
I was 15 years old when I was diagnosed with Crohn’s disease. Crohn’s is an autoimmune disease where your body is constantly attacking itself, and the digestive system in particular. This causes a range of problems, from mere agony to malnourishment and tooth decay, which left untreated can result in dire degeneration. Having spent my whole life in unfathomable pain that I had come to consider normal, with my 15th birthday celebrated with my extremely weak and underweight body, it should have come as a relief when the reason behind my agony was finally discovered. However, when the news came that I had an incurable, lifelong disease, I felt my world shatter around me. This is it, I would think.
My life was completely over (or so it seemed). My attendance at school meant I had to drop out and become homeschooled in order to at least try to complete my GCSEs. I had cut myself off from the outside world in order to keep my disease to myself, and neglected my friends and family to the point of isolation. I could barely summon the energy to leave my bed, on such a sheer amount of medication that I felt completely out of touch with reality. My local hospital became so familiar that I could have hung “home sweet home” signs above my hospital bed, with doctors and nurses becoming my only interaction bar very few people. It was a dire transition from happy-go-lucky healthy teenager to barely being able to stay awake due to exhaustion, pain and depression.
My diagnosis felt like a life sentence. All the activities and adventures I had loved seemed impossible to reconnect to, with the people I had valued in my life suddenly distant from my drug-hazed point of view. I lost all passion for life. I would read about how complications of the disease rather than the disease itself could be the cause of death, but for me it felt as if everything was already over.
I spent a long time in this state, until I was discharged from hospital and had my medication tapered down. As the summer months before my 16th birthday came along, even my home schooling felt less like a punishment and more like an award. I would spend two to three hours studying each morning, before going out to explore the depths of Brighton or London, adventuring around a country I had seen little of before. I started reading again – travel books and stories about epic adventures – and started to dream of a future again.
GCSEs ended and I passed everything with high grades, to be followed with acceptance into a good college. Medication-free after a close call with a severe illness that mixed with my medication would have rendered dangerous consequences, I was managing my health precariously, but happily, with diet. I moved to study a bachelor’s degree in my favorite country in the world – Wales – and started a travel blog. Hospital visits were rare, and it felt like a blessing to be free from the medication that blurred what I thought was real and what really was real. For the first time, I could really see myself living a normal life.
Today, I am on maintenance drugs and steroids, and am constantly in the dark about my health. I have no clue how long this medication will keep me well for, nor how long until my next flare. But honestly? I don’t care anymore. I’m taking life how it comes, and for the first time in a while, I can see myself living a life of travel, adventures and good food. I have come to terms with my diagnosis, and have learned that it needn’t mark the end of a happy and healthy life. If anything, having come close to the face of death at such a young age has taught me to take what I can from every moment, craving life. So here’s to realizing something so small as getting diagnosed with an incurable lifelong disease doesn’t have to be a life sentence – even if it does mean I can’t eat chocolate.
Follow this journey on Wandering Everywhere.