Warning: contains GIFs
Being chronically ill is much like juggling countless juggling balls, only to realise no one has ever actually taught you to juggle, and you have to muddle on as best you can on your own, with the threat of the full weight of your life’s obligations coming crashing down on you at any given moment.* Some assume that having a chronic illness absolves you from mundane life tasks, but the opposite is true: you have to deal with the same challenges everyone else does, with limited resources, as well as the other shit chronic illness throws at you.
I feel like I’ve spent the past 6 months or so buried under the weight of medical appointments that have gone precisely no where. I saw a gynaecologist to investigate possible causes of my severe abdominal pain, and even had a costly laproscopy, only to find nothing. Undeterred, I then pivoted to the gastro field, working with a dietician and gut directed hypnotherapist**, which is ongoing and costly and providing little result.
Meanwhile, an ENT performed a costly nasal scope, followed by a costly nose cauterisation for bleeds with more costly treatment and advice (do you see a pattern forming?) for my chronic rhinitis which has provided absolutely no relief. I don’t have allergies, nor do I have endometriosis, cysts, coeliac disease, notable food intolerances or anything which might actually be causing my troublesome symptoms – all I have, it seems, are the symptoms themselves.
This month, I saw a cardiologist, who was helpful enough to do an initial telehealth appointment, and even understood the general nature of my case (POTS, fairly well medicated, my main concern is ME/CFS). But in the aims of potentially improving my symptoms, he prescribed an entirely optional, non-PBS medication that I’m not sure I could ever afford. Like so many medications, it may or may not make a small difference to my quality of life, which makes it even harder – am I willing to shell out a good portion of my income on a medication which may provide small improvement that I might have to give up one day due to financial stress?
Not only this, but I have several specialist appointments coming up – all in the pursuit of answers. At least, having seen a doctor once and ascertaining they aren’t going to throw me out the door, screaming “FAKER!”, they become a known quantity. Who knows how these other specialists will treat me? Meanwhile, I continue to see my GP and psychologist, who are essential at keeping the boat afloat but don’t seem to plug any of the holes which allow water to gush in.
And for every specialist and allied health professional I have seen, there have been an equal number in Melbourne and Geelong that I have contacted who have refused to take on my case via telehealth. So, there’s some indifference mixed in with a bit of kindness and pity, with no answers to be had. I feel like my medical history can be summed up with the shruggy guy: ¯\_(ツ)_/¯
When you are healthy/non disabled, you kind of assume that the healthcare system has at least some answers. You go to a doctor, they might refer you to someone else, but at some point there is validation and treatment. It doesn’t ever cross your mind that you might be stuck in some endless merry-go-round of seeing medical professionals who can’t really help you, but you have no choice in seeing anyway. It’s as dehumanising as it is infuriating.
I know I see so, so few doctors, specialists and allied healthcare professionals compared to other chronically ill patients. Really, I consider myself lucky to not be shelling out hundreds each week in medical appointments, and I do get some time to myself.
But when you have so many balls in the air, at some point or another you start to wish that fewer of them were mind-numbing medical appointments, and more of them were just fun – or at least allowed me to fulfil some of my other obligations.
*I feel like this is one of my clunkiest metaphors ever, but my brain is feeling extra-clunky today after having spent 2.5 hrs on hold to a service company.
**Yes, this is a thing, and even has some evidence behind it. As efficacious as FODMAPs in treating IBS, it seems (though naturally I can’t find the study I’m thinking of).