LIFE ON THE OTHER SIDE OF THE FENCE – TRYING TO BREATHE

Photo by Michelle on Unsplash

I thought I would switch persona for this post and blog about some of my recent experiences as a person living with a long term condition (LTC). It is a weird experience being a health professional regularly in the role of patient too, you do see things through a different set of eyes and from a range of perspectives.

I have the kind of respiratory LTC that means that I am symptomatic every day and unfortunately for me, my symptoms are overt and although I would love to hide this LTC, I cannot. Just writing this post feels very exposing. I cough and sometimes I cough a lot, I cannot control it, it controls me. I have other symptoms but this is the one that others see and I find it difficult having people see my vulnerabilities this way. My students, colleagues, friends and family see my weakness front and central. I try to be honest and explain what is going on with me so that people do not worry.

I have been in the middle of diagnosis changes for the last 12 months and I am still awaiting confirmation from definitive testing that should happen soon. However, I have lived with these symptoms for about 11 years and I have learnt to adjust to life with them. I don’t let this LTC rule my life, I take each day as a fresh breath of air (literally) and stay positive.

Evening cocktails

The purpose of this blog post however, is to talk about people’s reactions to my symptoms, things that I see most days and that sometimes make me feel offensive in my own skin just by existing and breathing. When I cough, I always cover my mouth, believe me, I am self conscious of how I am perceived. On public transport, in restaurants and in many places, when I cough, people look at me like I am carrying the plague and that I will infect them with an apocalyptic-inducing virus. In a setting where the environment is quiet like a performance, concert or cinema, people make their annoyance known. Peoples’ facial expressions do not hold back, they speak loudly about me to their companions, people move away and to some extent I have got used to these reactions. If I’m brave enough to get my inhaler and spacer out in public, I’ve heard the words ‘it’s a crack pipe’ more than a few times. I am frequently the butt of jokes regarding ‘my 40-a-day habit’. Most people would not react in this way to someone with another kind of disability.

When I’m coughing a lot, it is really difficult knowing that you are being watched like some kind of spectacle. Colleagues, students, friends and family really are the exception here; they are the best. They continue and don’t make me feel uncomfortable, just allowing me to gain control and carry on. It is the perfect compassionate response and I don’t mind if someone asks if I am okay. My symptoms really don’t interfere with me doing my job well, they just mean that my students learn that health and ill health comes in all shapes and sizes.

Recently, I had an experience from someone I know, who knows some of my difficulties with this LTC. Their reaction floored me, hurt me and made me reflect on how I am perceived by people. I coughed once behind this person who proceeded to let me know that my ‘coughing over them’ was unwelcome, a number of other things were also said and they related their concern that I could infect them with a life-threatening infection. This was just another episode in the series of feeling that my existence with this condition is offensive. Very unlike me, I was speechless and could barely respond to this individual and it left me feeling sad, isolated and misunderstood.

What is the point of all this monologue? Our society is full of individuals that live with LTCs, diseases and health conditions that are unseen. Whether that is a physical or mental health problem, most people don’t have a sign saying what label they are living with but we do see people’s symptoms out in society every day. I wish people were kinder towards those like me, I wish people could start from a compassionate position, with patience and thinking the best of others. I wish there was less judgement and more tolerance of symptoms. So next time someone really needs the toilet urgently before you (but they don’t look ill to you), someone is anxious and seeking reassurance or someone needs to sit down on the bus but they are younger than you…maybe have an open and compassionate mind.

I am open to answering anyone’s questions and thank you for reading.