You win.

I don’t understand how every test can come back all clear and I can apparently be the “healthiest” person in the world, but still be so sick.

I also don’t understand how your Doctor of six years can not say one single thing to you in an appointment, and not offer support in claiming for a Disability Benefit.

WHY DO YOU THINK THAT SOMEONE WOULD WILLINGLY CHOOSE THIS LIFE OF PAIN AND SUFFERING? WHY WOULD I WANT SOME MEASLY GOVERNMENT PAYMENT WHEN I COULD BE WORKING IN MY DREAM JOB, EARNING DOUBLE THE PAY? WHY WOULD I CHOOSE THIS LIFE OVER THE LIFE I LIVED PRIOR?

And, I’m extremely tired of the question, “so, what were you diagnosed with?”

And my response, “oh, they have no idea”.

And the judgemental stares from friends, family, Specialists, randoms.

Apparently if Chronic, Invisible llness wasn’t enough to be confused about, I have to add the whole “undiagnosed” thing into it.

I’m tired of watching life pass me by and having no control over it. I’m tired of pledging my case. I’m tired of the people who pop in and out as they please, thinking it’s okay. I’m tired of the questions, the trials, the theories. I’m tired of feeling so much, yet feeling so little. I’m tired of people thinking they know what this feels like – when they have no idea.

You win, you win. I can’t see another Specialist, or take another drug, or answer another question, or hear “stay strong/positive”.

I’ve had enough. I give up.

61 comments

  1. I can’t like this. Cmon you are an example to everybody reading you. You can not just give up in a blog post just because of people. You owe it to yourself not to give up. And think about those people who don’t have any kind of support but reading you.
    You can’t give up, you just can’t!

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  3. I get it Cass, I do. You get to this moment where you just wonder about whether or not anything matters anymore, and you really don’t care. I suffered with Ulcerative Colitis for three years, and when I flared up, and was really sick, I just wanted to die at times – being on and off medication didn’t help – and I wondered what the point of my existence was. If your specialists and friends and family give you problems, that’s not right. I – along with your followers – will always support you. If you ever need to talk, I’m here.

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    1. It’s hard, isn’t it? The not knowing is the worst part. I’m so upset. My entire life has been consumed by this illness… This unknown illness. And, you are right, nothing seems worth it anymore and I don’t care. I really don’t care. How do I help people if I can’t even help myself? Thanks for your support my dear. You are always incredibly lovely
      xxxx

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      1. It’s incredibly hard. And you think so much about what could happen – or what isn’t happening – and you can’t stop it…or at least it feels that way. Chronic illness messes with your psyche, and that’s the cruelest part of it. Thank you for your kind words. Means a lot

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  4. Hey love. I am sure this is really tough for you. I cannot claim that I know what it feels like.I will not tell you to stay positive, but I do ask you to please not give up. It might seem like there is no hope but if you feel like you’ve hit rock bottom then it can only become better after this. Please, please take care. I can imagine that it is disappointing to not have any answers but please don’t lose hope. I don’t even know you in real life but I love you. I hope your tomorrow is better.
    I don’t know if me saying any of this help or not but I want you to know that I care about you.

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  6. You are speaking what I am feeling. Wrote this last yr and it is still the truth (linked). For the things I am actually diagnosed with, it is a huge relief (however hard it is to know the truth), and for the things that have no answers at all, it is terribly frustrating and makes absolutely no sense to anyone. It’s like your body is owed an answer! And yours is too. You are not alone.

    Blood Work Results Freakout

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  7. Cass, I’ve answered your earlier email. I hope it helps you, even if only a little bit.

    Your tests are normal because they haven’t run the right tests yet. Dr’s egos get in the way sometimes, and they take it out on us when we aren’t immediately fixable. You HAVE to get medical support from someone else. There must be one good, supportive doc out there who can help you evidence your case for this g’ment payment. If not, you will have to evidence it yourself. Make a list of all your symptoms, draw up a time-line of how this thing developed and continues to develop. Make a list of all your appointments, all the meds, all your horrible bad reactions. Write a letter expressing your fervent desire to be well, tell them how frustrated you are by all this. Tell them how disabled you have become from this illness.

    Big love,

    L. X

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  8. Life can really suck at times, and I have no real words of advice to say. I’ve never been faced with your situation, so I’m not going to try and empathise with what you’re going through, but if you ever need to vent or anything – I’m always here.

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  11. Please don’t give up. Your writings are so important — you are educating people who don’t understand and providing support to the many people suffering without diagnosis, like you are. I’m so sorry that the doctors can’t figure this out — yet. We are supporting you!!!

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  12. I feel your pain, situation and judgements. This life is hell on earth and I wouldn’t wish it on my worst enemy…You’re not alone, I’m with you all the way in this and I truly hope you get some kind of relief soon..,

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  13. It took almost 3 years for me to be diagnosed and for some people 7 some more 10 years. Please don’t give up. They would discover what’s wrong keep trying. I remember a top physician specialist say I should go home and that’s there was nothing wrong with me. I remember giving up for a few months but I went to see more doctors. Finally, they know what’s wrong with me. Hang in Dear. All we can do is keep fighting and have HOPE.

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    1. I was told to go home, give up, and wait to see what happened, too. You are your own best friend in all of this, and you need to start actively researching things like thyroid, adrenals, fibromyalgia, ME, CFS and other syndromes with “non-specific” symptoms. The internet can be a very valuable source of info. I found my first decent thyroid doctor by talking to Mary Shomon, who was then a new thyroid guru (don’t know what her status is now, but you used to be able to email her direct, think last time I tried it was made impossible by her fame making her build protective walls and email filters that meant I lost that direct contact, but there could easily be someone else out there doing similar things). And you have here, and everyone here who loves you.

      I literally only discovered a group of undiagnosed but chronically ill people when I started blogging on here and met you and a few others. I spent the whole thirty years alone without family support nor medical support nor fellow patient support. I was repeatedly told they’d “never seen anything like it”, and I always knew there must be others, because I don’t see how any single human can be SO special, SO unique that they are the only person on this planet to suffer the those symptoms. Get online and start looking at forums for people sharing the same symptoms, Cass – there WILL be others out there like you, and one or more of them will have found answers somewhere along the line 🙂

      You never know, the thyroid thing could very easily be at least a large part of the answer. I hope it is, because that’s treatable, and you’d get your health and energy back if it IS that. Got to be worth investigating 🙂

      L. X

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  14. Doctors love to think they have all the answers. When someone comes along that reminds them they don’t yet know as much as they think about the human body, it makes them angry and uncomfortable. We don’t like the unknown. It’s fucking scary. So rather than confront the idea that they maybe aren’t the all-knowing gods of medicine they think they are, they turn on the patient and blame them. They doubt the patient’s truthfulness, or sanity because anything is preferable to admitting to themselves that they failed. It’s infuriating, and so childish.

    I am sorry you are still going through this after so long, love. No one deserves what you are experiencing. And it’s hard enough to deal with already without the looks, the implied questions, the microaggressions directed at you, blaming you for your own illness. I don’t blame you for wanting to give up. It’s just so fucking unfair and sad because you are such a sweet and insightful person.

    Sending you love and lots of warm hugs, as always. ❤

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    1. CD, I said exactly the same thing earlier! It’s true. They blame us for their failure to work out what’s wrong with us. There are a lot of spoilt-brat docs out there who get so petulant that they throw their toys out of the pram. When you find a good doc, you need to hold on to them for dear life.

      Before I finally got diagnosed, I wished I lived in a medical soap drama – they always dx, treat and cure every mystery chronic illness inside an hour! X

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  15. A diagnosis would be a helpful validation of all you are going through. It’s bad enough to be suffering so much for such a long time, but then on top of that, to have people think it’s nothing?!? Beyond aggravation. I still remember the gratitude I felt to the first psychiatrist I ever worked with, when I said, “ugh, why am I having so much trouble getting better? why can’t I just get over it?” and he said, with gentle kindness,” Because you have been experiencing a very severe depression.” It means a lot to have doctors/specialists believe you and recognize the seriousness of what you are experiencing. I wish you could find that.

    What is wrong with your doctor? Not talking to you during the appointment – that is neither kind nor professional. I wonder what s/he would reply if you asked. Maybe your doctor is feeling discouraged too. I just read a book by Atul Gawande (Being Mortal), and he talked about how much doctors want to have the answers and want to “fix” things. That is how they have a sense of competence. When they struggle to find answers, or with elderly patients who have terminal illnesses, he says they are often awkward because they feel incompetent, and nothing in medical school prepared them for that.

    I remember a couple of days ago what a lovely day you had and how beautiful you looked–glowing. I hope you have many more of those days in front of you. Please don’t give up!

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  16. That sounds awful. How long have you been undiagnosed? I remember when I was undiagnosed but experiencing horrible GI symptoms. My doctors even had the nerve to suggest that I was anorexic and made me see a psychologist to diagnose me officially (not anorexic ever btw, and that assumption by the doctors made me even more depressed). If they cannot find some sort of concrete abnormal blood test or whatever, they assume it is something you are doing to yourself or that it is all in your head. I remember the day my mom called me in school and told me that they finally found something abnormal in this obscure stool test. I cried tears of happiness in class and then had a panic attack because I was experiencing too many emotions at once.

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  17. I’m so sorry you are going through this. I know far too well the emotions you’ve shared and my heart breaks for you. It is so hard to handle the journey of finding a correct diagnosis, let alone face a lack of support and even judgment from doctors, family, friends. It’s brave of you to share your raw emotions here because so many can relate and feel “normal” just by finding that common ground with you. I encourage you to use all of the supportive comments here to remember how many people are here for you to support you keeping up the fight, even if you don’t feel like you can on your own. I get wanting to give up. I’ve felt it, too. Just know you’re not alone. So much love to you, girl!

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  18. Hi Cas,
    Really identifying with you today. (How corny does that sound right?) Anyway, feeling that surrendering kind of feeling today. Sometimes it’s just easier to do that than to constantly fight this.

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  19. I think that I currently have something wrong with my kidneys but all my tests are coming back normal, and since I have IBS, my doctors want to blame it on my colon. But there is no evidence for anything. Just frustrating :/

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  21. I don’t think for a minute that you’ve given up. Everyone is entitled to a day (or three) every once in a while to wallow, to feel sorry for themselves, to complain and/or to whine. When this happens to me, there is usually chocolate involved. And potato chips. Possibly ice cream too. It’s so so hard and exhausting to appear strong, to encourage others (as you and your blog do for so many), to keep positive. If I could give you some spoons, I would. In the meantime, do what you need to to have a break, to recharge. Tomorrow will be a better day.
    Linda

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  22. i know how i have suffered at the hands of friends, co-workers, family when i became ill with bipolar, which to them is still an invisible illness….but at least i had a diagnosis, i could tell them to read about it, i could inform them, etc. i think it would be a thousand times more difficult if i had no name to call it by, no where to point to information about it, doctor to verify to them that it was real. without a diagnosis, it is ‘just in your head’ since you can’t prove it isn’t. you are not whining, you are sharing your feelings of stuckness, of aloneness, of abandonment, etc. and you are entitle to that.

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  23. Thank you so much for validating the things that I and so many other people with a chronic illness feel. I love reading your blog because it makes me feel less alone in all this. I sometimes feel like I’m the only one who goes to the doctor and is told that all my tests are clear and I am so healthy. So thank you for saying those things. Thank you for being honest and real. Please know that in all your discouragement and frustration, you are a ray of hope for others who feel alone. Don’t give up.

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  24. Rest and know that we all care about you. Sometimes it’s okay to just rest, cry, scream and lick your wounds for a bit. There’s no shame in that. Take a break and stop fighting. It’s okay… your resolve will come back. Be gentle with yourself. This battle is SO VERY HARD that we must take a break once in awhile

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  25. GIving up is giving in. We had to keep fighting Doctors, and insurance and all the fun stuff that the unknown can force on you, but our biggest enemy was ourselves. The moment that we gave up, or gave in, it was all done. It was when we starting fighting back, and pushing harder that we got results. Keep fighting little warrior.

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  27. Get angry, scream, shout and throw something, then you’ll get good tired, take a breath and you’ll get back up again. When young women get ill in films they tend to delicately put their hand to their heads, and swoon, they lay in wrinkle free beds with neatly displayed hair and impeccable makeup and they make gentle murmurs until the doctor holds their hand and cures them over one night. If only! Chronic illness is brutal, it’s passive aggressive, it’s sly and it snatches away your freedom, it’s a terrorist that barters in fear. It’s ok to feel shit, to feel angry, to feel beaten or overwhelmed it’s part of the process. I never really knew anger until these conditions came around. As for not having a diagnosis I have felt that frustration but wrapping all those symptoms in a pretty bow with a neat label does not make the symptoms easier, the name thing just makes it easier for others. It took around 7 years until I got an accurate diagnosis but every new doctor I see has a different take on things and likes to think up new scenarios so even with a ‘name’ the debate around my symptoms and results continue. Sometimes a long wait for a diagnosis is necessary as test results have to be reviewed over years for any real picture of what’s going on to be formed. And a ‘normal’ result may be normal for the average of a population but it may not be normal for you. Everyone’s pain and story is different but your not alone and it will not defeat you. Much love xx

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  28. I totally understand your feelings!!! I, too, am tired of being tired and not knowing why. I’m tired of going to different doctors to only have them say, “We’re not really sure what’s going on.” I’m tired of not having a family support system, but intead having siblings who tell me I’m nothing but drama. I’m tired of trying to live and support my son on $1000 a month. I don’t know why people think this is anything we would EVER choose. Who wants to choose to merely exist and not live in any way? Who would choose to feel dead inside while watching others thrive and smile? Who would choose to feel sad and not know why they’re sad? Honestly, at times, I’d rather have a visible illness so I’m not made fun of or told I’m lazy or worthless and those words have been spoken to me. I wish you the best, but I do understand. And it’s ok to have your feelings validated. They are YOUR feelings, and they’re real.

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  29. This might be rude and I’m sincerely sorry if it is, I’m just super curious. Do you ever pretend that you’re not sick anymore? I know this totally isn’t the same but when I’m sick sometimes I just pretend I’m not and just go about my day as I normaly would. As if it wasn’t there. Again, I’m not chronically ill so I might be way out of line saying this to you. I’m just wondering if you ever pretend you’re not sick anymore…?

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    1. I don’t know how to respond to that.
      I’m trying not to take it as an insult, because I need to understand that people don’t understand. So, they try to make a comparison to something they are used to feeling – to try and better make sense of it.

      The simple answer is, no.
      You can’t turn it off like a switch, nor pretend like the symptoms aren’t there. The pain is very much there, the dizziness is there, the nausea is there, the inability to digest food… it’s all very much there. It’s almost impossible to just look past them and try and have a “normal” day. It isn’t like having a gastro bug for a few days, or a chest infection or flu. Those things – maybe you have a strong body enough to just “push through”. I used to. I know what you mean…. that it’s more like a mind over matter thing.
      But, these symptoms are very real, and much worse than an average bug.
      Saying that implies that if I try hard enough, the symptoms would disappear on their own and I could work, drive and eat normal meals. It’s also implying that my symptoms are somewhat not real.

      I can try and preoccupy my thoughts as much as possible, but it won’t make them disappear.

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      1. I didn’t mean it in that way at all, I mean maybe on good days, I don’t even know if you get good days where things aren’t as bad because I’m just new to reading your stuff. I didn’t mean to offend you.. Honestly I was just wondering. But I get it, it’s too bad to do that. I’m sorry you have to live like this. I wish you didn’t.

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      2. I’m okay! Don’t apologise!
        If people are aren’t surrounded by it or have not gone through it, they wouldn’t know. I never knew prior to this either. My assumption of chronic illness was that it had to have a name and a treatment – which is not the case at all.
        There ARE good days. They aren’t umm completely good, haha, but they are better than the bad days. The symptoms seem to settle, the medication works, you can do things a little more freely. Does that make any sense? I can’t really explain it.

        I wish we all didn’t have to live like this. Some have been suffering for years.. Decades. I’ve only hit my seven month mark…

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      3. You’re right, I literally can’t even imagine lol nausea is my biggest weakness. Like literally can’t even deal with it without feeling sorry for myself and crying or something lol I super hope that doctors can find out what’s going on or that the virus just gives up or something awesome. I know, far fetched but perhaps. Thank you for taking the time to try and explain though, I real appreciate your understanding!

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      4. It used to be mine too. I would cry when I’d throw up. That… feeling of it coming! Haha. But when it’s there every day, you kind of get used to the feeling of it being there. It still sucks, I assure you!

        I hope so too (:
        No problem xx

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      5. Literally though, the feeling of it coming but it takes it’s sweet as time and you hate throwing up so you fight it but still wonder if you should just force it out and get it over with lol. I’ve never been able to force myself though. And throughout this whole dilemma you just wanna cry because waiting for it and getting it over with are both terrible. Yeah. I hate nausea.

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  30. I know how you feel. Give yourself permission to have a ‘fuck the world’ moment because holding onto it to maintain other people’s expectations will make you worse.

    You’re stronger than you know you are but sometimes being strong is knowing when to go ‘RARRRRRRRGGGGHH’ x

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  31. I can’t like this either. I know what your feelings are like, not your individual pain. I have psychological problems so can understand that part and you know how many times I went to the dr and he would say after me to every specialist known to man “I DON”T KNOW. We can’t find anything.” See I have always had weird medical conditions that no on could figure out. I don’t get the usual things people get and drs don’t know everything. And they all ran the same damn tests expecting different answers. It took me less time to figure out the Fibromyalgia, but I didn’t know that was causing all kinds of problems since I was young. I thought it was normal. Weird, but normal. I complained to the orthorpedic dr so long about all these weird things he picked up on it and sent me to another rhuematologist. He did his thing with my spine diagnosis and then off to the pain dr and the rheumy. Please don’t give up. We all are here for you and understand. ❤

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    1. By the way I don’t know if anyone mentioned this, but nausea and dizziness can be caused by the inner ear. I had to go to the ear, nose and throat dr and then to a specialist therapist who worked on my balance problems that were causing it. Might be something to try if you haven’t already.

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  32. This must be so hard, especially after having a good day! For me personally, good days followed by bad ones just make the bad ones seem that much worse, because you were able to remember what good days felt like for just a moment before crashing back to bad days. I don’t know if that makes any sense at all. I’m in a similar boat right now. The med change that landed me in the emergency room made me never want to try a new med again. I’m just so tired of it all. I just got denied for disability too because my heart is apparently functioning satisfactorily (or so they decided after looking at only 3 hospital reports that showed nothing and decided that was enough information, so they stopped looking and completely missed the tests that proved otherwise). No one can be positive all the time, especially not through something like this. We just have to keep pushing on as best we can! Sending love!

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  33. I have perfect blood-pressure, heartbeat and sugar levels are fine, you look me and say ok his ready to go home, take five steps and hemorrhaging and can’t breath which not something you sort of fake, but the doctor baffle because show no outside signs and piss me off because everyone think lying until it too late

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