I’ve just stopped and realised why I can’t get a handle on the fact my life is completely different because of chronic illnesses. I don’t fully believe I’m ‘ill’. I feel like I’m ‘faking’ or just being a wimp compared to the normal person. I’ve been convinced I can heal myself because it’s not real. For 3 years I’ve tried every treatment going to the point of running out of anymore treatments. I’ve been trying to prove that I am ‘normal’ when in reality I struggle all day everyday and there’s nothing ‘normal’ about it. I thought I was just mourning the person I used to be.
Does anyone else feel this way? Pain Imposter Syndrome is a real thing and the penny has just dropped in my head!
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Oh yes but everyday I wake up with a ontarage of symptoms so I no its not fake its like an intruder has hijacked my body I feel sun burn and itchy all over I'm trying to learn to except it but is hard as I hate this enemy I was diagnosed year and half ago I'm thinking I'm going to wake up normal one day but I doubt it x
Do you mean you don’t think your pain and symptoms are “real” ?
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Yes, did it not make sense? Sorry, I’m very foggy
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That’s ok, do you not take any meds?
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I’m not currently on anything. The GP have sent me to the pain clinic because they don’t know what else to do
I don't think I've ever doubted that he symptoms were not real ... Even when the doctors were trying to say that my physical symptoms were just part of my depression - I kept arguing that it was the other way round - the physical symptoms were causing my depression, out at very least making it worse.
I totally get what you’re saying. Ive had so many people say ‘I don’t look ill’ or ‘I’m too young’ or ‘you’re can’t be ill’ which has made me step back and question everything
I feel very similar, I have no memory of not being in pain, but I go to the gym and do their hardest classes, I appear completely well. I'm usually in reasonably good spirits in the gym I think bc I feel "normal" I exude strength. Then when I'm home I'm exhausted and I suddenly struggle to get off the sofa. But I have to get up every 5 minutes bc I have a 2 year old. Then I spent the rest of the day dreading having to go to the school to pick up my daughter. Wheeling the pram there, smiling at the other parents while I feel alien to them, the agony of sitting in the park not knowing what to say bc I look normal but I feel awful. Every time I have to phone the doctors bc yet another part of my body starts kicking off in a way that I can't ignore, then yet another explanation from the doctor that there's nothing they can do and it's just "another one of those things" while everytime my mother goes to the doctor they seem to manage to find a treatment. It doesnt help I had diagnose myself, I dont think they would ever have bothered.
Yes, that’s exactly it! It awful and people drill so much doubt into you that you start to doubt yourself! My messages are always open if you want to talk x
I think it doesn't help that I've always been insomniac and I've always been "sensitive", people are used to me being a bit shit. Although I'm actually naturally a very sporty person I constantly get injuries. When I went to boarding school I kept getting detentions for basically not keeping up with the routine, 27 beds in a dorm no sleep in loads of pain no one believed me, to the extent I was given a detention for having glandular fever until the blood tests came back positive, then they finally took me out of detention and sent me to a doctor after 4 days!. It took about 10 years to finally get some real help with my migraines which had started when I was 5 but by the end of school had become chronic. I'm part of a hospital clinic I get access to people who understand the latest research and I get access to new medications. It makes such a big difference to have a tangible recognisable condition compared to fibro. There is no one that you can ask any questions of, no one to help you know how to proceed. You're left on your own to deal with it which I think is partly why it doesn't feel real. I question it everyday......
Migraines are also something that are hard to live with and hard for others to understand, it’s not ‘just a headache’. If people understood and were empathetic without thinking it’s made up would really help! If you need someone to listen I will!
I'm not sure how we are supposed reconcile these things, although I do know that since the migraine clinic have taken me on I've been able to let go of that particular fight. In fact the new drug I'm on may help my fibro but it's too early to tell yet but fingers crossed!!
I also think thats another reason we dont feel "authentic" in our suffering bc medication doesnt work. I, like you, worked my way through the pain clinic etc I was on lots and lots of meds but none of them helped enough, it goes forward as being further proof it can't be real, if you know what I mean?
Oh I totally know what you mean. If there are all of these things to try to treat it and nothing touches it how is that possible? It makes it all even more frustrating for us, especially when we are already doubting ourselves.
Costachondritis is horrible as well, poor you! My parents were very kind and gave the impression they believed me but my mother says only now she has polymyalgia does she really understand. Obviously living at school was catastrophic for me and fibromyalgia didnt exist then anyway. Im not sure we can ever shed these childhood experiences but hopefully we can forgive ourselves of the doubt and guilt we carry if we can acknowledge it. I'm very glad BigCat47 raised the topic, it's on my mind a lot!
It’s crazy when you start to think about all of the times you were told you were faking but it turned out you weren’t. Like when I broke my finger at 7 my mum refused to take me to A&E and when we finally went a few days later it was broken! I’m so glad it’s helped you 😊 it definitely opened my eyes! X
Wow so many of our experiences are the same. I broke my ankle when I was about 10, I used to sprain my ankles all the time, my primary school didn't believe me and made me walk the 3/4 miles home!
Yup although I have met many people who have used manufactured symptoms to get my attention, especially at boarding school so being sinical has to applied sometimes to protect yourself. However you would have thought people who are "looking after" children would be able to read a child's character and tell the difference.
Personally for me I know my pain and other symptoms are real. There is now way my brain can imagine such intense pain and such an array of symptoms. Without my medication i would be bed bound and living a very very different life
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I’m trying to explain that yes all my symptoms ARE real but in the back of my mind I’m doubting it all from years off comments of ‘you’re too young’ and ‘you don’t look ill’ if that makes sense
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Makes perfect sense. I am the same. People told me when I was diagnosed I don’t look ill in fact I look “very well” and “you are far too young” to have fibromyalgia. I wish..
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Yes, and these comments can be damaging subconsciously leading to thoughts of ‘am I actually ill’ - I hope that makes sense, I struggle to put into words what I mean!
If it was age related then I wouldn’t have been diagnosed at 21. Children and teenagers wouldn’t be diagnosed with it either. They really don’t know a thing about fibromyalgia and I think that’s why they are quick to dismiss us and treatments.
Your differently not faking it, fibro symtoms are very real maybe it’s just accepting gradually that life has changed and take each day, I think because other people don’t understand the condition sometimes we feel like we have to put on a brave face through it all, but I’ve found that it’s me that will suffer if I don’t show family the other side and being brave all the time. I’m totally more relaxed about it all now and keep a small circle of good family and friends around who get it . I hope my post makes sense, take care.
The symptoms are 100% real! I know that but there’s always a voice in the back of my mind doubting it. From years of bad comments have made me question things.
I’m glad you understand it! There are people here that will never experience this and that is okay. But having to go through thinking you’re faking on top of the condition makes everything so much harder! If you ever need someone to talk to you can message me!
Aww thanks. It is a very lonely world even living with people when no-one gets it and expects you to behave and function 'normally'. My husband and adult children just make me feel like a waste of time and space despite the fact they do love me. I am 62 and can't work due to fibro but don't get my pension either. I have had two heart attacks, compressed nerves in my spine, sacrolilitis and fibro. I really could not work but feel so guilty.
I know how awful it is! I try to pretend to ‘be normal’ but that ends up making me flare more. This condition is so evil. But I hear you and I will listen .
I had a slightly different experience, in that everyone knew I was in pain and diagnosed what it was, but because it is an as-is disease, I couldn't believe I was an invalid. In fact, it took me two years to accept it, and it was only after that I found I could cope better with it. So please don't try to fight the diagnosis as it and the numerous medicines can only help make your life a richer more pleasant place. Keep well and stay safe.
I have done the same where I want it to be anything but fibro but also Ive had so many people say ‘I don’t look ill’ or ‘I’m too young’ or ‘you’re can’t be ill’ which has made me step back and question everything
I understand what you’re saying but this is a little different to accepting it. I’m terrible at explaining things! I’ve accepted it but from comments like ‘you’re too young to be ill’ and ‘you don’t look ill’ has made me doubt if I am actually ill... it’s hard to explain!
Absolutely! You've hit the nail right on the head! I often sit and think "was that really me who used to do a triple split shift at work, do all my house work, look after my kids, cook, wash, iron make packed lunches for school and clean for other people" I'm 63 now and all that feels like another life🤔And then people look at me like I'm bonkers when I'm limping around the shops(that's if I can manage to shower, get dressed and get to the shops) it certainly is an evil condition in one way and another 😢 xx
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I totally get what you’re saying! I could do 13 hour shifts one after the other! I could be out all day and still go out again at night. It’s sad to think what we used to be capable of! I think if it as being trapped in an old crippled body that wasn’t meant for us.
Altho it narks me when people tell me I don't look ill, everyone believes me. And I fully accepted this one week after the diagnosis. (Altho I am still looking for & finding things I can influence.)
BUT: It's **me** who who "sees" the invisibility, who doesn't understand why we can't see how it works, who is surprised by sudden onsets. I haven't really had flares it's been roughly one long one for a year, apart from many 'bad' treatments half-killing me and other 'good' treatments helping for a few hours or days. But I also often have a sudden 3-min. energy which suddenly wastes away if I go over the 2min.-limit. The cryotherapy & acupressure I use worked better in summer, now it's cold it's only a slight help, much like cold-showers & breath-holding, which are still working fairly well.
A nice quote I saw as a pic on reddit by logan @brainwxmrs:
my symptoms: *get progressively worse*
me: oh thank god i thought i was faking this the whole time.
I hear what you’re saying and it makes sense! It’s funny how some of us deep down believe we are faking.
yes i feel like that, i don't tell people i have fibro because a lot of people don't beleive/understand it. Lately after having it for years, i feel a lot worse, maybe my
age catching up, extras stress, a am my husbands carer now. But life is a struggle and most afternoon i take a long nap out of necessity. I feel a bit ashamed that i have to do that.
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