Why? It's the question I have found my self asking a lot over the last 6 years since my Open Heart Surgery, why me? why doesn't my heart just work like it is supposed to? why can't I just make this go away? I have been very open in the past about being grateful to my heart surgery, it has allowed me the opportunity to grow, it is a part of the reason I am who I am today. But being grateful doesn't mean it's all sunshine and roses, there is so much hidden underneath the surface that no one sees or talks about in living in the aftermath of open heart surgery.
It used to be weird to me when people would say there is a grieving period after surgery. What was I grieving? I still had the ability to live my life, I was in one piece (mostly) what was there that I was grieving exactly? but I do, I grieve the life I had before, I grieve the naivety of believing my body was functioning correctly and living without the fear of my heart just giving up. There is a sense of contentment and carefreeness that you loose after having open heart surgery, there is a voice constantly running though your head that every little pain or every activity you do is going to lead to your heart failing. I have people tell me all the time "but your healed now, you don't have a heart condition. anymore, they fixed that" and oh how it bugs me, now granted people never mean any harm and it is not coming from a place of malice, but even if I didn't still have a bicuspid aortic valve that is yet to be repaired, just because the physical defect has been repaired that in no way means that I am just magically cured now, there is annual check ups, 2 yearly echo cardiograms, not to mention the truck load of trauma and healing that has to be worked through. This is the problem living with something other people can't see, unless you look physically unwell or are actively receiving treatment people assume you are fine. they don't see the sleep less nights, the crying in the shower, the not wanting to wear certain clothes and asking your mum if your scar is noticeable because you don't want people to look at it today. There is so much complexity to the aftermath and recovery outcomes of heart patients both mentally and emotionally and so much that is not yet understood so much no one talks about. We need to open up the conversation and have the hard conversations the ones that make people uncomfortable, it's what allows us to grow and get better. Patients and their families need to be equipped with the tools and ability to advocate for themselves and furthermore to know what they are advocating for, how is the best case scenario uninformed patients that have no idea what help to ask for or who to ask to get it. We need to do better, we need to be a voice for those who can't or don't know how to and we need to make sure every single person on this journey knows they are not alone.
Jess xx
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