I wrote this essay-style post as a submission for a zine. It wasn’t quite the right fit for them but it’s a response to the theme of ‘abrasion’ as it relates to the body and mind. Abrasion as a pain, a wound, friction, the scraping away of skin, a spot of raw flesh, a badly healed scar, a surgical incision site, a scab, exposure, a trauma. Can an experience be abrasive? Can a relationship? Can an invisible illness inflict a type of emotional abrasion; a tension felt inside, a process that grinds and erodes? Can an abrasion be confronted, articulated, overcome? If not, why?
I am familiar with things that should still be abstract concepts but I do not want to be. I am accustomed to impersonal letters and consultations but I am not a willing participant. I am at ease with feeling breathless but this surely should not be something I am so closely acquainted with. I have my diagnoses, they are rare but they are chronic and nobody really has any answers for me. For years now, I have witnessed my perceptions of my illness change and fluctuate. Situations that would have once deeply unsettled but now the bar seems to be higher for that level of discomfort.
My attitude to risk is much more free, is it me that has changed or was I defining the wrong things to be risky all along? Treatments that were once prescriptive and recognisable to me, to my friends and family were probably quite risky but that was all okay because we had at least heard of the medication. We thought the risks might not apply to me because I would not need to take them on a long term basis, we were not armed with the knowledge of my future prognosis and were trying to fix the here and now. We were still safe in the misinformed naivety of thinking I had the same thing wrong with me as those wheezy kids on sports day. Now, we know that currently nothing exists that can fix me. My role as a patient has become more prominent in my overall identity and we start to think about the risk associated with new interventions. I have no choice in this anymore because I have to put my faith in the system to keep me safe. So I, willingly now, sit as a guinea pig and take it in. Risk becomes less risky when you are desperate.
I navigate hospital car parks, corridors and outpatient clinics so easily. I glide past those that are struggling to find ‘Outpatients C, Corridor 3, Second Floor, B Wing’ without really needing to think or take in my surroundings. I am a regular here, the hospital is so recognisable but no matter how much time I spend here, it still struggles to greet me like an old friend. Now it is more of an awkward but necessary interaction, like a meeting with a bank manager but with fewer cards on the table. Blood tests and admissions just do not seem to faze me anymore as I move through the process I have forcefully become accustomed to. Strangely, I observe, my hope has not been worn down. I still pin a lot of it on the team responsible for my care. I still wonder whether they will have something new for me and I still hope that it will all just go away.
I know who and what I will encounter on my trips to the emergency department. The check in desk will struggle to collect my details as I gasp for breath but still they will ask me for my address, telephone number, next of kin and condition. The triage nurse will look ruffled but not too alarmed as they remain professional and compassionate. They will ask me to write down the name of my conditions, so obscure to them but so very normal to me. They will make some phone calls and leave the room for a while to try to find me a bed. They return and ask me to “sit somewhere I can see them” just so “they can keep an eye on me.” I am used to being monitored or reviewed with greater urgency as the winter months creep in. Back in A&E, I have a bed. Another nurse will take my observations and “the Doctor will not be long, we’ve told them to see you as soon as they can.” In the meantime, my blood will be taken without blinking an eyelid. Faces will appear behind the curtain, ask questions and look puzzled at my answers. There will be a warm “are you okay, love?” from the housekeeper or an offer of a cup of tea. I will try to respond but nobody understands what I am saying. Still I am not used to this. The first Doctor will appear, they look concerned and are busy ordering chest x-rays and more blood tests, along with “the one that might hurt…have you had it before?” I nod, tired now, but still at ease with this process. They leave, acknowledging that they need the respiratory doctor to see me. I wait, growing more uncomfortable with my symptoms but still too at home with the environment of bleeps, buzzes and smells that should not be something I recognise so easily. This journey will see me interact with limited levels of success to various doctors of increasing seniority with fewer answers. It is all part of a rhythm I can tap my feet to, part of a cycle that repeats year on year.
My diagnoses have ultimately flipped my life and my perspectives upside down. I am aware that a lot of this is contradiction and in flux. I am a person that needs plans and answers, I crave progress. I question, I search for information to absorb and new insights to uncover. Breathlessness, wheezing, loss of voice and a chronic cough have exposed my body to scrutiny, to observation, to rigorous testing and judgement. Each medical interaction has, ashamedly, ground down my edges and dampened my quest for answers and change as I have had to succumb to the prognoses of my multiple chronic conditions. I am tired, anyone would be. This process is bumpy and treacherous but I hate that it seems to have become smooth sailing. Now I try to be a model patient in a bid to be taken more seriously as I know from experience that this process rewards compliance. Outwardly I try to appear smooth but in reality I am hardened to the effort that all of this takes. I do not want to lose the fire inside my belly but I am starting to wonder whether this friction I seem to create needs to lead in to acceptance and I need to achieve this without losing my hope.