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here’s a running joke between a few of my colleagues and I that I talk about death too much, to the extent that they holler and ring an imaginary bell at my first mention of death on any given day. It makes us laugh and boosts my reputation as a not-so-secret goth who defies convention by wearing hot pink. But mainly I like this silly routine because I am obsessed with death. I am obsessed with the complexities of living and then, one day, just not.

(FYI: This week I hit a new record of 08:02am when I mentioned craving “the cold earth of the grave” because I had upwards of 6 emails to deal with).

I’m not particularly morbid. (Although by this point you may already disagree with that). Often the mere mention of death physically repels people around me; they find it too uncomfortable and creepy to talk openly about the idea of dying.

Only it isn’t an ‘idea’ it’s a fact—an inevitability. The only one we all share.

My feelings on death have fluctuated wildly through the years. As a child I distinctly remember telling my very Catholic mother that I was terrified of the idea of ‘eternal life’; I have to live for 80 years (maybe nearer 60; I am Scottish after all . . . ) then start all over again?! NO THANK-YOU LORD! I’ll pop downstairs if you don’t mind.

As I got older, I spoke a lot about death with my grandmother, who was open about her own faith and excited to see her husband again in the afterlife. (Doesn’t say much for my conversation to be fair but I’ll let that one slide). I watched my beloved grandmother become ill and tired of life, and I watched her die. This was the first big loss in my life and I still to this day find it hard to think of her without welling up. I adored her and I miss her. Seeing her die disturbed me greatly and shook out of me the idea that death is always peaceful. It’s not; it can ravage the body, cause great pain, and become something that is longed for despite an innate need to live.

When I became ill myself in my early twenties my view on death changed again. I quickly encountered the great challenge of ‘staying alive’ when every cell in your body wants to call it a day and pop down to the heated basement. The exhaustion in simply existing with a chronic illness can take an intense toll on the mind as well as the body and finding the enthusiasm for a life that can often feel consumed with misery is . . . difficult to say the least. So, I think about death and have thought about death for many years and continue to. I think about it when I feel low and how it would feel fine to just let go and go. I think about it when I feel good and panic that one day I’ll have to go. I think about it when I feel joy and remember I have an illness that will likely shorten my time here. At times I panic at the thought of it and at times I relish the prospect.

I know how all of this must sound if you are reading this as someone without an incurable illness. I know because I’ve seen the horror on the faces of those who love and loathe me, at the mention of my relatively relaxed attitude to death. They think I’m depressed, or suicidal or have a literal death wish. I admit I’ve been all those things, but not now, and not in the eyes of those who I know and love who also suffer from a chronic condition. Some of these friends I’ve lost to illness, and as hard as that has been its also served to help me understand how fleeting it all is, and how important it is to LIVE while you are alive. How horrifying the end can be and how freeing. I’ve known those who have accepted it and those who never could.

Talking about death and indeed grief isn’t something that happens commonly in the treatment and continued care of those with chronic illness. I suppose it doesn’t need to be in the cases where it seems far off, and really why would you bring up something so distressing in the process of trying to get your patients ‘better’? But for me, the lack of discussion around what is essentially an inevitability only serves to frighten me. Why is something that will happen sooner or later shrouded in such dark clothing? Why are we conversationally dressed like a funeral before the event? If we are to prepare ourselves for the full onslaught of what our illness may entail why shouldn’t we know what may happen as our condition progresses to its final form?

I admit I may be in the minority in this but talking about death doesn’t frighten me. Death itself does, sometimes. But it’s out of my control, just like my illness. I can try my best to eat correctly, get enough rest, take my medication, and get my check-ups, but it doesn’t stop my illness from absolutely flooring me when I least expect it. It’s unpredictable and upsetting and like all toxic relationships, we dance through life together in a warped sort of co-dependent tango. I politely ask for it not to kill me, and it obliges, for now. But in accepting life ends and does indeed go on, I feel a strange sort of peace when my illness feels all-consuming.

I love my life and I am sad that part of that life involves a condition which causes me, and often those I love, distress. But I’m also fascinated with the beauty of living on in the minds and hearts of those who have loved me when I do have to go. If I leave before I’d have liked because that’s what my genes have decided then so be it, but I’d like to be thought of kindly. Maybe people will remember me for my frankly show-stopping impression of the Bee Gees Barry Gibb circa 1998, or how great my jugs looked in a corset in early 2005, but I’d mainly like them to remember me for being kind, because it’s all we have to offer one another. The kindness of nurses, doctors, strangers, and those around me have helped me cope with my condition in immeasurable ways, and as someone who has often had no option but to leave her life in the literal hands of others, kindness is a priceless currency.

Talk about death, don’t talk about death; it’s up to you. It’s your one life and you can live it as you choose. But allow those of us who are perhaps more closely acquainted with it to occasionally discuss funeral plans over a fishbowl of Mojito without judgement. We will love you for it and may even include you in our will.

(FAO my colleagues: Time of death mention today: 12:48pm)