Must people with chronic illness share everything about their health to raise awareness?
We all have secrets. Little tidbits about our lives, relationships, wants and desires. Some of us keep our personal lives close to our chest. Some share thoughts and feelings with close friends and family. Others share pretty much everything with anyone that will listen.
As someone with what could be termed a ‘chronic illness account’ on Instagram and other social media platforms, I have thought a lot about what I will and will not share online about my life. By nature I am an under-sharer, if such a word exists. I keep my personal life to myself for the most part. There are a few selected friends that I go to when I need support or advice, or just a good old rant about whatever is troubling me. There are, however, a few experiences that I have kept wholly to myself, the pain being something that I am not willing to share. Some of those experiences took place in a hospital consulting room, or during tests when my body was prodded and poked while I swallowed back tears and tried to silence upsetting thoughts.
My health issues aren’t a secret as such, but the question of sharing this aspect of my life is complicated. I don’t know a single person in my non-internet life who lives with my chronic conditions, or any similar to them. For this reason, I kept quiet for years, hiding my symptoms as best I could. Feeling embarrassed, ashamed, guilty even that I was ‘different’, that I had a body that wouldn’t work as I wanted it to. It felt incredibly lonely to live a life without another person truly understanding what I was going through.
But then a year or so ago, a whole world opened up to me when I downloaded the Instagram app on my phone.
Suddenly I became part of an amazing chronic illness community. There were all these people that ‘got it’. People who understood the difficulties, limitations and emotional turmoil that chronic illness can bring and supported each other through it. I made friends who I keep in touch with through private, direct messages. I have opened up to them, sharing experiences that I have not told my ‘in real-life’ friends. The sense of relief in not feeling so isolated has been life-changing.
