What No Diagnosis Really Means

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.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.

9 thoughts on “What No Diagnosis Really Means

  1. bumblebeechula says:

    There are a lot of elements in this post that are bang on. There is so much uncertainty that surrounds undiagnosed illnesses and more than once I’ve actually questioned myself about whether my symptoms are real or whether it’s in my head. The thing is the symptoms you talk about are real and their impact on your life is real. Figuring out what is going on and managing your condition is so important and having a diagnosis will help you in many ways most importantly may result in treatment. I am sorry things have been so difficult for you in getting answers I truly hope you get them soon. Best of luck and you are doing awesome~

  2. spooniemom says:

    Oh honey I feel you here! I’ve been undiagnosed for over 4 years now. Every day feels like a lifetime when you are battling an invisible monster. I hope we can both find the answers we’re desperately needing. 💖

  3. Elsie L.M.C says:

    Everything in this post is so true. I have been living with an undiagnosed illness since I was around 11 years old and I am now 18. Many people don’t understand what it’s like not to know whats going on inside you when the the pain flares up or new symptoms take hold. And even doctors have tried to tell me it was nothing before until we made them give me a scan which revealed lesions on my brain and even then I think couldn’t be diagnosed. It’s annoying but it makes us all stronger. 💗

    • FindingRainbowsintheDark says:

      I’m glad this post spoke true to you! I am so sorry to hear I can’t imagine how frustrating your journey has been! I am always open to hearing your thoughts and struggles if you ever need someone to talk to. Definitely makes us stronger 💖

      • Elsie L.M.C says:

        Thank you, that is so kind of you. I came across your blog while searching for people with undiagnosed pain and not many people came up, like it’s not talked about enough when so many people are living with it. I think it’s great how you speak out about it as many people don’t get the pain that comes along with it other than the pain it brings to your everyday state of mind and how doctors look at people differently and treat them like rubbish half the time. I hope you find relief through writing about it like I do and everything goes well with your health 💗😊 my GP always says it is a waiting game as we never know what’s going to happen next, but as long as we keep a positive attitude, the pain of it all keeps us strong 💗

  4. edsmycoping says:

    I know you’ve probably been suggested this but, Spinal Tap for MS? Your mentioned symptoms cover it. Thanks for your post regardless. I hope for your finally finding an answer regardless.

    • abutler2295@gmail.com says:

      I had a spinal tap for MS in my early days of being sick, it came back pretty normal. Do you know if they recommend having another after a certain length of time?

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