The hardest aspect of having so many painful and debilitating symptoms that are mostly undiagnosed is the fact that many people, medically trained or not, don't seem to believe I am 'really' ill.. Like I have a choice in this!! Maybe they think I will get fed up of being patronised or living in poverty and I will get up one day, stop feeling sorry for myself and get my life back!!

Unfortunately I have had mental health issues for most of my adult life and that means that highly trained medical staff.. Who should know better.. Feel its OK to bullet point their letters regarding me with the statement..'well known to mental health services'.. I can even imagine the reaction of other hospital staff when they read it.. Or when it appears as a red flag on their PC screens to 'warn' them in advance of my attendance

On the up side though.. I am developing quite a quirky sense of humour with just a hint of sarcasm thrown in for good measure

So please, anyone who gets where I am coming from, share your experiences if only to reassure me that I am not the oddity that many people believe I am x

12 Replies

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  • Hi LizzyG

    Your not odd at all, just human.

    I've never been treated for mental health issues but do suffer from depression even though I admit that to myself as I don't sometimes belief that my other half shares the same feeling.

    Prior to being diagnosed with lupus nep I went back and forth to the doc only to think that it was in my head. When I told them that I felt low the advice that I was given was to pull myself together and get on with it, so I did.

    So now I don't really bother telling people how I really feel as I think they are not going to believe me so do what I can myself, and I think that way you feel less disappointed when you don't get the reaction from people you would want

    So your not on own, mental health, depression is poorly understood, but keep your chin up cus you are worth more.


  • Thank you so much for your words of encouragement

    Never give up talking about how your illness affects your state of mind. Keep sharing what you can with us as we know only too well how you're feeling.. Love blessings and hugs xxx

  • Hi LizzyG

    Have you thought about changing Rheumy's to find one who would believe you?. It's dreadful to be treated this way!. I do understand what your saying as in the beginning of my illness when I was a kid they thought it was growing pains or in my head and it's on my file and I shudder inwardly if a new doctor goes back thru it and finds it!. A lot has happened since medically and I have several diagnoses and am believed but I feel it can never fully go away! Hope that makes you feel better, your not alone!. If your struggling financially go to your local Citizens Advice Bureau who will run a benefits check to see what help you could be entitled to and help you claim. Just a thought. Take Care. X

  • Hi misty

    Thank you for your reply. Yes I think I remember a lot of conditions being blamed on growing pains when I was a kid!!! I also remember our family gp prescribing a low dose of diazepam for me when I was just 15 to help calm panic attacks!!

    Yes I have started to see a CAB worker and together we are trying to sort out my finances

    Thanks again and big hugs xxx

  • I so relate to what you are describing. I don't have mental health issues - or at least I'm not diagnosed with any. When I was a kid I had severe eczema and alopecia and my parents assumed this was the result of me having two disabled younger sisters ie a degree of neglect. My mum also blamed anxiety following an enforced separation as a baby when my sister was born and my mum had to spend a few weeks in intensive care on blood transfusions leaving me with a young au pare.

    This all turned out to be nonsense and the real reason I was frail was because she had inadvertently starved me as a newborn (wasn't producing enough milk or feeding me frequently enough) and I was a day away from death at 2 months old. When they realised (a visiting nurse friend) I was fed up on semolina to build me up and no doctor was ever told. So my body went into fight or flight and has been ever since I believe. Hence 52 years of autoimmune problems which keep changing every few years with hormonal changes. So far I have diagnosises of hashimotos and RA but I think I actually have seroneg Lupus and my GP told me she agrees.

    Mentally I'm strong but because of being made to feel like a neurotic as a child- I struggle to trust my own symptoms a lot of the time - and any doctor casting a critical eye or implying hypochondria will make me totally paranoid they are right but angry at the same time!

    I do now get counselling which is good but as she's apt to blame my late mum for everything and gets cross with my doctors on my behalf each counselling session is a bit of an own goal if this makes any sense?!

    The real issue is learning to trust ourselves and believe in our symptoms because I think if we do then others will too. My doctors do seem to believe in mine so far although they think I'm over anxious ("introspective") about drugs - but they have recently learnt the hard way that I'm usually fearful for good reason.

    The downside of being outwardly convincing is that I then wonder if I'm too convincing each time I take a powerful drug and have a bad reaction to it. I am the one who wonders if this is all self imposed/ in my head not my doctors.

    So the havoc this causes is great because it's like being on an emotional and physical roller coaster. I suppose there is never going to be a win win situation when our bodies are attacking themselves though.

    I think dark humour, walking the dogs daily, coming here for discussion and support and to give back where possible, keeping up with my hobbies and self employed activity as an artist and getting an occasional full night's sleep are the things that help me most. But still too much of my time is spent worrying and flaked out in bed in pain.

    It seems to me that the mind and body are entirely interconncected and that anyone with an autoimmune disease (or two or three or four!) is going to struggle with their mental as well as physical health to a large degree. I think the dry sense of humour you are developing will stand you in good stead and will endear you to others despite your health problems so this is what I would build on. You really aren't alone.

  • Hi there

    Sorry for late reply and thank you for your support. I am always grateful to people like yourself for sharing their experiences as it really does bring me validation and relief too that I am not a fake!! I do also get extremely paranoid about not being believed. After a recent visit at the pain clinic I noticed in the report sent out afterwards the doctor stated I.. Scored highly on the psychometric scale in relation to pain illness and disability. Even now I don't really know what is meant by that but I suspect it relates to my 'perception' of those!! I just make too much of a fuss..well hello.. Yes I do and will carry on until I get taken seriously.

    Thanks again and big hugs xxx

  • You just made me feel completely normal!! Thank you!!! I was beginning to loose it today! Yes I clearly understand were your coming from! I too have that red market thru my notes and on there sreens! I get treated at times like a out cast!! I've had issues all my life with mental health in the 90s Id run out of skrinks to see!! I'm not crazy enough to get the support I need yet I'm crazy enough to be kept on the files! I've had a really checkered life - all related to violence! I was brought up in care homes all over south west! I'm in my 40s now and I thought my sle would ease - not a chance some days I don't even know who I am anymore! It's so badly affecting my relationship with my partner - men just don't get it do they?? I'm use to him calling me a funny cow and bless him when I'm stuck in bed but when I'm not I'm just the slave catching up with house hold chores! Seems the days of cuddling up on the sofa are gone, but how I miss them!!! I tell him to leave go get sum1 else but I guess he's to lazy to go out on his own - then I feel guilty and then depressed and we go round and round in circles!! I had my 1st child young & my 2nd before I was 20 my eldest was born bright yellow and very small my2nd was smaller but was perfect - only for 3mths and then she just died -Cot death so I fight everyday with myself and my feelings!! Thank you for making today a gud positive one for me as I truly understood every word you wrote and I feel lucky as well as happy that some one some where feels like me!! Hope you have a good day too! Xx

  • Hi Mandy

    Thank you for sharing your experiences with me and I do really feel for you. I also had my children very young. I was mum to three children by the age of 22. I was truly blessed as all three were born healthy and I can't imagine the immense pain you felt at losing your child. I totally believe there is a link between repeated trauma throughout life and the physical manifestation of the many symptoms we all carry with us every single day and night. Yet most people can't even imagine how it feels when gps consultants and even close friends and family members choose not to recognise or acknowledge our pain.

    It's no wonder we question who we are!!!

    But you know something Mandy, we are not crazy people and how strong are we to still be standing? Don't feel bad about asking questions and searching for answers to all this AND be kind to yourself as that's what we find hard to do. Love n hugs xx

  • You and I could be twins. I too wonder if the mental health status voids our ability to be taken seriously. I'm taking a break from drs while I figure out a new way of addressing this.

    We know things aren't ' right' but don't know how or what to do...

    I believe you!

  • Stress causes heart attacks and strokes but when attached to a predominantly female disease we're flung back to the days of female hysteria!! The fact of life and medicine is our mental health effects our physical health immensely. Not just you, it effects your doctor too. Does his blood pressure not rise when upset? Of course it does! Any medical practitioner who thinks that a persons mental health should be blamed on the patient is foolish and wrong. Yes, meditation has saved my life from the onslaught off pain but my husband, who has major depression simply cannot do it. His depression, like anyone's who isn't circumstantial is caused by an imbalance of chemicals in the brain. Would a doctor look down upon a patient needing insulin to regulate his pancreas? So why should the frown at depression? Circumstantial depression also needs serotonin added to cognitive talk therapy. But there a doctor should have human compassion for the circumstances that lay so heavily upon the person's soul, if you will. But for any doctor to look at you and say it's all in your head- well- ask him to look up psycosomatic in a new medical dictionary. It won't be there. Medical academia has stated that virtually ALL illness are influenced by the mind through stress and other "emotions". So you've had a tougher life than most of us should simply mean you're a strong woman who overcomes adversity, hardship and trauma. It should never leave them wondering if you "did this" to yourself. If you widh to do all you can to lessen the influence of your mental health over your physical I would highly recommend it and would recommend you telling every medical personnel you see what you're doing, whether yoga, chanting, meditating or walking. If knife throwing eases your mind then learn it! Then only the consultants who's opinion you wouldn't want anyways will think poorly of you or your state of health. Remember always that doctors are to be our trusted advisors, not God. They are human and make poor judgements like the rest of us. But snapping to judgement over having mental health issues officially noted, because we ALL have them, should be trained right out of them! I live in the States and am unfamiliar with your red checks but I invision it to be like our military doctors. I once stole my records during transport to yake out something that was a false positive but kept creeping up to embarrass me. So I think I somewhat understand. But I would also like to say our country is the worst at understand mental illness. But perhaps the UK isn't far ahead. There shouldn't be alerts or red flags on anyone's records simply for seeking mental heathcare. That's creating an atmosphere where those needing it will not seek it out for fear of being labeled. That system is archaic and unhelpful and I hope done away with by now.

    I know it's been years. I hope they've been kind to you. Whether for you or someone else in need reading this I hope I helped in some small way to let you know you're not alone, nor should you feel the need to be. It's the failure of the medical system that you even had to ask this question. Courage on, my warrior friend.

  • Hi all I have read thro all your posts and you could be talking about me the no of time the doctor said its just growing pains or worse it's all in her head. Puberty was hell menopause just as bad. I have been told I am depressed or more lately but you don't look sick. Therefore being dismissed yet again. My Family were the worst it would be get up and do something you will feel so much better, or if you would just loose weight then you would feel better

    I truly believe if what we feel inside you could some how see on the outside then we would get the help and assistance we all need, but how do we get them to see?

  • It angers me so much to hear about doctors who say to their patients or make them feel that "it's all in their head"! Pain is real! Just because a lot of doctors don't actually understand how it works, like fibromyalgia, doesn't mean it's not real.

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