Mind the gap

In the same way our ‘shoulder bone is connected to the neck bone’ and our ‘neck bone is connected to the head bone,’ the physical symptoms of any condition are linked to our mental wellbeing. Our minds are connected to our bodies and physical health has huge ramifications on our emotional state and vice versa. There are so many ways to describe how we think and feel; our mood and sense of self fluctuates depending on so many factors. Nothing is constant about our bodies and we’re pretty much always in a state of flux. To account for this, we’re often asked by our friends, colleagues and clinicians to take a broad-brush approach to describing how we are – lumping together a mish-mash of emotions in to a coherent “fine thanks, how are you?” or “I’ve been struggling lately.” These statements don’t even scratch the surface of what life is like, particularly what life with a chronic condition entails and our thoughts and feelings, our mind, is often neglected in conversations relating to physical health especially in the clinic.

Like many, my interactions with health care professionals from my GP to hospital consultant and everyone in between are focused purely on the most problematic problem at that time. Clinic appointments are long-awaited and although valuable and appreciated, they’re only a snapshot in to life with a chronic condition. Respiratory physicians will focus on my lungs, naturally, that’s what they’re best at. Emergency doctors will be trying to stave off infection and help me to breathe, and of course that’s hugely important but I’ll also get other health care professionals focusing on my vocal cords, my airway and my cough. We’re often having heavyweight discussions, I’ve sometimes discovered new life-changing diagnoses (two in the last year) or I’m the recipient of a string of bad news – there’s no treatment/cure/plan [delete as appropriate]. All of this can be overwhelming, let’s face it, it’s never underwhelming but a common thread that runs through all of my appointments to date is that nobody asks about my emotional wellbeing.

Every single alteration to mind or body can affect both mind and body. A lot of the time, this is positive. Are you falling in love? Great! You might have a ‘glow’ about you or a ‘spring in your step.’ When you receive yet another diagnosis of a condition you struggle to spell (try: inducible laryngeal obstruction or tracheomalacia) it absolutely boggles your mind. It takes some time to digest, to comprehend what it all might actually mean and brains fizz with questions – some of which can’t be answered. The impact of all of this new information can do so many things, prompt a myriad of conflicting thoughts and yet still doesn’t take away from the physical impact of any health condition.

I am usually relieved to get a diagnosis, a verification of the fact that my symptoms weren’t actually in my head and “No, it’s not just asthma.” Often, I’ve lived with the challenges of the condition for a long time anyway so it’s kind of affirming. What I’m never really prepared for but still very appreciative of is the lack of sugar-coating. When I ask about how conditions may impact upon my actual life outside of the clinic, the answers are hard to swallow. Questions about my ability to continue to work are answered nonchalantly, those on my energy levels are answered factually according to their physical counterparts and those on the future are answered truthfully – with a massive question mark.

The repercussions of my consultations continue way beyond the clinic. I adjust as much as I can to my new normal. I listen to my body more but respectfully give it challenges. I work around physical limitations and try my best to adapt to uncertainty. I live as fully and completely as I can as I try to accept that sometimes, I just can’t do things, I try to continue positively in the spirit of things to carry on and not let my health define me. I am more than the sum total of my four chronic health conditions. I’m ambitious, I love my job, I’m proud to be a daughter, a partner, a sister and a friend. I love music, especially when it’s played live and I have an unquenchable thirst for facts and appreciation of learning. I also like coffee and writing. Some might agree that I have a reasonable sense of humour, I’m interested in places and people. I have a lot of life left to live, lots of experiences and challenges ahead. I’m nearly 30.

A lot of this can be forgotten in the clinic. Appreciating the growing pressures of our health service and limitations of time, money and expertise; I find myself treated less like an individual and more as a human embodiment of my condition. It’s not that staff lack care and compassion, they do – I have a brilliant team of experts around me. But, they are experts. Like any expert, they are ensconced in the intricacies of each condition and its clinical presentation. For them, it’s their everyday or at least they’re familiar with seeing it a lot. That can sometimes translate in to the fact that they see a particular patient group frequently. As a ‘nearly 30-year-old,’ the stark difference between me and the usual patient makeup is an age gap of at least 30 years. Generally speaking, this doesn’t bother me as we’re unified in our symptomatic experiences. We’re not, however, from the same generation or stage of life. We differ in ‘life lived’ and ‘life to live.’ My fellow patients have usually (but not always) been married, started families, travelled and retired.

Back to the consultation, this can completely change the dimension of conversations between patient and clinician. The doctor, used to interacting with patients of a different generation may not always appreciate the importance of work to quality of life, perhaps dismissing a question about jobs or social life for one about treatments, deemed to be more important by physical specialists. As patients we’re forever grateful of the work, commitment and breakthroughs from medical science but we’re still people above all else with lives to live and neck bones connected to our head bones.

Please keep that in mind.

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