I’m sure we’ve all been in medical settings feeling vulnerable and exposed, poked and prodded; feeling more like an anatomical curio at the mercy of a doctor and her medical student than a living, breathing, rounded person with likes and dislikes of our own. I can remember that feeling, but I don’t really experience it any more. I’m desensitised to the vulnerable exposure of being touched, examined, poked and pricked. Of having my limbs grabbed and moved for me, of demonstrating my tandem gait and reflexes, of being spoken about like I’m not in the room and Googling the medical terms later on. Of standing semi-naked in the middle of a photography studio (yes, I’m still talking about medical settings), of having little crosses marked on my skin to highlight the areas of concern, of having pieces of my flesh cut out and stitched up (these ones aren’t MS-related, in case there’s anyone newly diagnosed reading this and having a minor panic attack), of being written about in a language I don’t have the education to understand. Of walking into a room full of strangers to have the most intimate examination you could imagine (I’ll leave it at that). Of telling person after person, stranger after stranger, the most personal details of my physiology. No, after eleven years I no longer feel vulnerable and exposed, it’s just part and parcel of having a chronic illness. Sometimes I get told to put my clothes back on.
Last week I found myself conversing with someone I’ve never met, over hours of emailing back and forth, about my sex-life (among other things). I should give you the context. I was contacted by an MS charity that I volunteer for, asking if I’d be willing to provide some of my experiences of ‘Dating with MS’ to someone writing their Masters dissertation on that very subject. I said yes, and a few days later I was (happily and willingly) sharing intimate details of my dating past and relationship present, including some less than pleasant experiences (from the dating past, not the relationship present). It tickled me how readily I poured myself into the answers and opinions that I was sharing with this person at the other end of our exchange. Is it my personality alone that leaves me with little inhibition in certain situations, or is it a result of the years and years my body has not been entirely my own? Am I so accustomed to offering myself up on a platter to be tested and explored and (hopefully) treated, that my line between “things I want to tell you” and “things I should tell you” has been blurred?
I’m not saying I didn’t want to tell aforementioned Masters student all that I did and instead felt like I should; I was completely comfortable opening up in the name of research. Maybe some other examples would better illustrate my incoherent thoughts.
What do my dentist, evening art class tutor, and innumerable taxi drivers, all have in common? They have all asked me “what’s wrong?”, or “what did you do?”, in reference to my walking stick. Rather infuriatingly with most of them, I told them. I felt like I should. I felt like I owed to these people, whom I was meeting for the first time, an explanation. A reason why my body doesn’t fit the “norm”. I gave these strangers (and most of them remained strangers) my medical diagnosis before they even knew my name – in fact some of them never did, and it haunts me still.
I’m trying to reconstruct the broken line between the things I must tell a registered medical practitioner, and the things I don’t have to tell anyone else. I’m trying to find the confidence to act in accordance with the fact that knowing details about a person’s health, about their body, is a privilege to be earned and respected; not something you can demand of a stranger or acquaintance. It doesn’t matter how “visibly different” their body may be. (In case you’re wondering about the apparent contradiction of writing an online blog that anyone can read, I’ll probably write about why this differs, at a later date. In a nutshell, I choose when I write, I choose what I write; I am in control of my body in this space – no one else).
I have crafted the perfect responses for the next time (and there will be a next time) I am asked a question like that, if I ever have the guts to say them aloud; “I’m not in the mood to talk about it, if you’d like I can give you my doctor’s name so you can just contact them directly to ask for my medical history?”, “nothing’s wrong with me, what’s wrong with you?”, or, “seagull attack”. (Follow up responses to that last one include “North Berwick beach”, “I still have no idea what they did with my toes” and “honestly, if you ask me, it’s almost not worth getting ice-cream”).
On a more serious note, though; what if I had been involved in a traumatic accident? And you are asking me to re-live it, remember it, just to appease your own curiosity. How dare you. What if I was still coming to terms with a recent diagnosis, and had taken up an evening class to deal with it and provide distraction, and you are asking me to talk about it, just to appease your own curiosity? How dare you. What if my condition was terminal, and I had two young children waiting for me at home, and I had a million and one other worries racing around my head as I jump in a taxi to head to an appointment, and you are asking me what’s wrong, just to appease your own curiosity? How dare you.
What if I have lived for over a decade with a condition that is becoming more and more a part of my every day, in so many ways that break my heart, and I am scared and grieving all over again, while simultaneously being bored to the back teeth of being asked about a stick, of being defined by my health, and just trying to get on with my life?
What if none of the above matters, and it’s just as simple as the fact that my body is none of your business?
I am in the process of reclaiming my body.
The next encounter will go something like this;
“What happened to you?”
*Deep breath; my body is my own, my body is my own…*