When I was young and in primary school I had plenty of friends and spent most of my free time out with them, or my best friends would be at my house. But when I hit high school everything changed.
My symptoms, which had been creeping up for years, became problematic when I started high school. When I fainted on my twelfth birthday, in October, my journey to diagnosis began and my social life changed dramatically. By the time February came I had to stop going to school, not to return until year 8, after I had been diagnosed with Ulcerative colitis.
They tell you what you have, they tell you how to treat it, they don’t tell you how much of an impact it will have on your life. This week I will talk about the mental health problems that can arise with this disease, but today I wanted to talk about how it can affect your friendships.
Now don’t get me wrong, this doesn’t happen to everyone, this is just my story. One of my biggest issues was the stigma around the disease. The toilet aspect in particular. As a teenager I didn’t feel comfortable telling my friends I had diarrhoea, I don’t think I ever told any of my friends in high school exactly what it entailed. It was too difficult to tell them that I didn’t want to go out because I was scared of having an accident. So, as time passed, I became more isolated and avoided social situations and as I spent the majority of my teenage years in one flare or another, things just got worse. I actually left school at the age of fifteen because I was told to either come back the next day or don’t come back again…being in a flare at the time, I just didn’t come back at all.
Now, my friends over the years have of course known I was ill. They visited me in hospital and were there when I was well. However when you spend so much time ill you begin to feel out of the loop. And here is why just having that one friend who knows everything can help.
My best friend, who I met only about 4 years ago, is the first person I’ve been completely honest with about my disease. If we’re going out for the day she is more than aware that I could have an accident or start to feel so ill we might have to come back. She never makes me feel bad if I have to cancel plans last minute or if I haven’t seen her for a while because I’m too ill to get out of bed. And if I can’t leave the house she makes the time to come see me or just text to see if I’m okay. When I was in hospital earlier this year she came to visit me nearly everyday and would text me in the night because she knew I hated being there on my own. I can’t explain what a relief it is to be honest and have someone who doesn’t get grossed out by my symptoms (or if she does she doesn’t show it!).
I of course have my family and my fiancé who are great and, obviously, completely understanding but sometimes you just need a friend. My main point is that I wish someone had told me how important it was to find one person who you can be completely honest with. Perhaps if I had done that in high school things would have been very different.
And this is why awareness weeks like this are so important! We have to try and remove the stigma around IBD. Maybe then my teenage self wouldn’t have felt so embarrassed about what she was going through. Maybe then we could all feel better about being honest about what we are going through and that might stop the awful feelings of isolation.
How do you combat the isolation with IBD?