I Want to Raise Awareness of Chronic Illness, but Must I Bare Everything on Social Media?

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 I have kept wholly to myself, the pain being something 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.

Yet outside of direct messages, the content of my social media posts has been the subject of much self-reflection. It took me a year to post a picture of myself with my face showing, and I don’t show my family or home. As time has gone on though I have became braver. I worry less about whether my real-life friends or colleagues will somehow find this secret account I have and post, for the most part, what I am going through. I have started to learn how to own my life, all of it, health issues and all.

However, that is not to say I share anything and everything on social media. There is a bind here that I negotiate every time I upload a post. On the one hand I value the feeling of being connected to others, and the helpful, inspiring, even funny conversations my posts generate. I also truly believe that raising awareness of chronic illness is profoundly important. If I can help to do that in some tiny way through my social media platforms then I am happy to share some of my health journey. It is without doubt that stigma, taboo and lack of understanding surrounds the world of chronic illness and affects everyone who has it. Invisible illnesses some of my conditions may be, but I hope that one day they won’t be invisible in other people’s minds. It is only by raising awareness that this can happen.

But on the other hand, however, should I have to bare all my experiences? Do I have a responsibility to speak of all aspects of living with chronic illness? Am I doing a disservice to the chronic illness community if I choose to keep some things to myself?

At the moment my answer is no. I don’t have to share it all, and I don’t have a responsibility to do so. Nobody online, chronic illness or not, is a commodity to be “consumed” in an all-encompassing way by others. Some may disagree with me on this, I know. They may say that “hiding” my experiences plays into the stigma of illness. But my health is mine and belongs only to me, and those I choose to share the details of it with. Sensitive doesn’t begin to describe how I feel about certain aspects of my chronic illness life. It is a life that I didn’t envision when I was growing up in my healthy days and I am still working out how to negotiate its challenges. It is a life that is delicate, personal and profoundly, gut-wrenchingly, upsetting at times. Therefore, it is for me to negotiate with whom I share these emotions and experiences.

While I truly admire those that share more then, it is not for me. When it comes to our health all the questions about sharing, in my experience, require a bit more thought. So to each their own, without judgment, is my stance. Because it is not the case that those who choose not to share everything about their health are hiding their “truth.” It is that we are in the process of accepting this truth, dealing with it, negotiating the parameters of its existence in our lives. And that can be a
profoundly personal, and not social, experience.