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.

woman with red hair standing in front of a historic building

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.


Find this story helpful? Share it with someone you care about.


Related to Crohn's Disease

two women hugging each other in support

If You Have Chronic Illness, Don't Forget to Surround Yourself With People Who Care

Whenever I am normally in a Crohn’s flare, I tend to isolate myself. I hate for other people to see me when I am in so much pain that I sometimes can’t even walk. I hate for people to see me crying out of pain, frustration and embarrassment. Since my diagnosis I have had people [...]
three girls whispering and pointing to one girl standing alone

Students Need to Stand Up for Their Peers With Illnesses and Disabilities

I’ve read some articles recently about students with chronic illnesses or disabilities being bullied at school by their own peers all because they looked or acted differently. Schools should be a safe haven for every child, healthy or not, where they can express themselves without fear of being teased. I honestly thought that since Columbine, [...]
woman sitting in a waiting room with her eyes closed

The Waiting That Comes With Autoimmune Disease

Tom Petty once sang, “The waiting is the hardest part.” If only that was the case with autoimmune disorders. Although, there is something to be said about waiting for the next flare. The next eruption from a disease that inevitably lurks around the corner. Sometimes it seems like the waiting is the only constant. Autoimmune [...]
file of life information

How I Prepare for Health Emergencies as Someone With Crohn's Disease

As a “frequent flyer” of the ER, I realized over the years that there were a few things I could do to make life easier for my husband, in case I couldn’t speak for myself and had to be admitted to the hospital, as well as EMTs, in case I needed medical attention. I have [...]