Growing up I always saw myself as the “sick kid”. I was diagnosed with Asthma at 18 months old and every year until I was about 11 years old, I spent weeks in hospital. I remember going through school with this stigma that I’d labelled myself with and how much it affected me. My asthma eventually settled, and I felt like I was again in control of my body. I no longer considered myself as the ‘sick kid’. It wasn’t until I started experiencing gastrointestinal symptoms from around the age of 20 (however I wouldn’t be formally diagnosed with Ulcerative Colitis until 8 years later) that again, I would be tainted with the “sick kid” stigma.
I never thought much of it as the symptoms would come on randomly and then wouldn’t occur again for months. This went on for years and during that time I saw many different GPs trying to find some answers. The replies were common, it was always “change your diet” or “you have IBS, so take this supplement”. Once, I even remember being told I just had a lazy bowel (what does that mean and how is this even a diagnosis?????). I got to the point where I even started to doubt myself and began hiding my symptoms even from my family because I thought they wouldn’t believe me.
This is the worst part of living with an invisible illness. Not only are the symptoms you experience invisible, you begin to feel invisible yourself when not even medical professionals will listen to you. The problem with seeing all these doctors and never really getting an answer, was that I began to ignore the symptoms as I believed it wasn’t something to worry about. I did everything the doctors suggested and yet nothing improved, in fact over time it only got worse. I felt so alone, I knew what I was experiencing wasn’t normal, however when I spoke to health professionals about it, they didn’t seem too concerned. This left me feeling crazy and I questioned myself and what I was experiencing. It made me believe that perhaps my gut health wasn’t as bad as I thought.
I believe part of the problem with me getting a diagnosis was that my initial symptoms weren’t how most Ulcerative Colitis cases start out. I had the opposite in fact, I would go weeks at a time without being able to go to the toilet. It wasn’t until 2020 when my symptoms began to really impact my day-to-day life. I found myself having more days off work sick than I had my whole working life.
I eventually had enough and tried out a new GP. This doctor was immediately concerned with the symptoms I presented with and sent me for urgent tests. One being the Calprotectin test which measures the level of inflammation in your bowel. A normal reading should sit under 200 and mine came back at over 900. The following day I was in a specialist Gastroenterologists office, all organised by my new GP as she was so concerned with the results, and within a week I had my first colonoscopy. As a result, I was finally given an official diagnosis of Ulcerative Colitis.