Never in my life did it occur to me that one day I would wake up sick and (potentially) never get better. I often brush over just how scary the unknown really is. When I let myself think about it, the truth is I’m shitting myself. I have no diagnosis, which sounds like no big deal right? Wrong. I can honestly say, living with an undiagnosed illness is one of the hardest things I will ever do.
No diagnosis means there is no treatment. Which means the longer it takes to diagnose you, the more potentially irreversible damage is done. It also means that there are no ‘band-aids’ for your debilitating symptoms.
No diagnosis means not knowing if you’ll ever get better, or how quickly you will get worse. It means not knowing the difference between just a bad day and a permanent ailment. Each time you experience paralysis or numbness – or any other symptom for that matter – you have no idea whether it will last minutes, hours, days or forever.
No diagnosis means no medical explanation for anything you’re going through. It means that time and time again you will be asked ‘are you sure you’re not depressed?’ because they have no idea how else to explain your symptoms. You will be asked so many times that you eventually will feel like you’re going bat shit crazy and making these things up.
No diagnosis means you will be poked and prodded by every doctor you meet. You will have so many blood tests you will wonder how you still have any blood left to give.
No diagnosis means you will become a medical expert on several illnesses you swear it could be – but it isn’t. It means that google doctor will be your worst enemy and your best friend.
No diagnosis means you will literally hope and pray for any answer – terminal or otherwise – because anything is better than being left in the dark. It means you will literally break down every time you hear the ‘good news’ that ‘you don’t have (insert illness here).’ It means every time someone says ‘well at least you don’t have (this)’ you want to scream at them and tell them you’d rather have that then be undiagnosed.
No diagnosis means losing faith in the medical community, who you once thought had all the answers. You will swear that all they teach in medical school is ‘if in doubt, blame stress.’
No diagnosis means there’s no ‘easy way’ to explain why you feel the way you do. You long for the day someone asks why you are the way you are and you can say ‘I have (this)’ instead of ‘well I have this illness, but I don’t know what it is and either do my doctors etc etc.’
No diagnosis means not being able to plan a future because you have no idea where you’ll be tomorrow let alone in five years’ time. Oh I’m sorry, you wanted a career? Too bad, because your new full time job is now visiting doctors and trying to figure out what the hell is wrong with you.
No diagnosis means people don’t understand. There’s no big scary medical word to describe what you’re going through? It mustn’t be that bad then, because if it were that bad then surely the doctors would be doing more to figure it out. Wrong.
No diagnosis means you can’t even get insurance. The question ‘any pre-existing medical conditions’ is an actual nightmare because you have one but there is no name for it. You will spend hours frustrating the ill-equipped staff of said insurance companies who tell you that they need to know your diagnosis before they continue. Oh I’m sorry, you’re the one who needs to know my diagnosis? Do you not think that’s all I’ve been trying to figure out for the last (however long)?!
No diagnosis means that your doctors will tell you that you shouldn’t put your life on pause because of your illness. You won’t be able to work or study or have a family but please, don’t put your life on pause. They will also tell you that you shouldn’t take a holiday until they know for sure what’s wrong with you, even if that is years away.
No diagnosis means there may still be hope that this will all be over any day now; but you never know. You never understood the phrase ‘hoping for the best but expecting the worst’ before, until this. Obviously you hope that one day (soon) you will wake up and be miraculously better, but do you expect this each morning you wake up? Of course not.
No diagnosis means feeling as though you always need to prove yourself. To doctors, to your family and friends and even strangers in the grocery store. It means not knowing whether it’s better to pretend you’re ok or to show that every single movement is a struggle. If you pretend you’re ok, will others assume when you actually show your struggle that isn’t legitimate?
No diagnosis means learning how to not have any expectations of your doctors. It means paying hundreds of dollars to take tests that you expect no results from. It means spending all your time taking tests that you cannot expect a single result from. The process of elimination seems to be infinite.
No diagnosis means no ‘disability’. The government won’t help you because while you may be clearly disabled, you don’t have a ‘disability’ because there is no name for it.
No diagnosis means being told to ‘try harder’ by those who see you struggle. It means they will confuse this with encouragement and think they are doing the right thing when all they are doing is making you physically exert yourself and feel like you have to prove your invisible illness.
No diagnosis means uncertainty, fear, frustration and disappointment are daily struggles on top of your illness.
Living without a diagnosis is frustrating to say the least. There is so much I don’t know and don’t understand. The hardest part about my illness isn’t that some days I can’t walk or feel parts of my body, it isn’t that I am chronically fatigued 98% of the time, it isn’t even the screaming pain I am in, it is the fact that I don’t know what is causing all this.