Yesterday I attended a hospital appointment to get the results of various tests I'd had done over the last three months. The tests included a 24 hour heart halter and a tilt table. The results of these tests concluded that I have POTS, or it's full name - Postural Orthostatic Tachycardia Syndrome. It's an autonomic disorder which means some of the functions that should work automatically in my body, don't. For instance my heart rate goes too fast sometimes, evidenced by the heart halter when I was sat at home in front of the TV. There are many things this syndrome does. I feel dizzy and lightheaded for little reason, I struggle to sleep and live with headaches and migraine. These are just a few of its effects.
POTS is fairly common within people living with Ehlers Danlos Syndrome. Even though I have both these disorders I live my life as many other people without them, do. I work full time, I socialise, spend time with my family and try to write. Some days these things take it out of me more than others, but I don't let it dictate who I am.
It is on this point that I wondered about the visibility of invisible illness. My Twitter profile and this blog tell of the illness that no one can see. My thoughts on putting it out there was to connect with people who live with and understand the disorders. Twitter has been great for that. Yesterday though, as I thought about blogging the results I questioned the reasons or need to put this information out there. Should I leave the information visible, thereby raising awareness of a little heard of disorder and champion invisible illness in an small voice fighting stigma, or should I remove mention of it and live my life in spite of two disorders that attempt to restrict me?
What do you think of seeing this information, either as a well and healthy person or as someone also living with invisible illness?