Feeling unheard by Dr's: Fed up today! Went... - Meningitis Now

Meningitis Now
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Feeling unheard by Dr's

menchild
menchild

Fed up today! Went to GP to discuss my issues. She had her back facing me for almost the whole visit. When I started to cry about how challenging my life is, she did not acknowledge me or even listen to what I needed to talk about. She just was typing out a note for me to get some blood tests done. I asked for a medical certificate and she told me she would give me one only for the short term. What the hell, they honestly give me the feeling that I am making this stuff up. The thing is....you can't see and nothing shows up on tests. Sighhhhhhhhhhhhhhhh. Finally I asked her to check my blood pressure - the machine was right next to my arm and she just said rather curtly - I have run out of time, go see the nurse! I can't get any understanding from the medical profession. I am going to find myself some more natural therapists - naturopath, homeopath, Bowen therapist etc. They at least listen and offer understanding.

35 Replies
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I am so sorry for what you are going through and yet it is so familiar. I don't know whether we should get angry at the Dr's, at the lack of training they are given in this particular field or at the pressures put upon them as they only have 5 minutes per patient. In any event it is ourselves who are left unheard, untreated and feeling unworthy to the point where most of us give up, put up with it, don't bother anyone and slowly wait for it to improve until we have some sort of virus or relapse. We attend, we try to put our foot down, all to no avail. It doesn't matter that we've been sleeping for 5 days straight and have no energy. It doesn't matter about the pains in our arms, legs, neck, back, head, face and jaw. It doesn't matter about the lights and sounds. Really it doesn't matter that you're whole body has shut down and you're scared as as hell because to them there is nothing wrong so it must be a viral infection. It's been a year and a half for me now. Last week I was thinking I'm cured, 2 full months feeling full of energy. This week I cannot stay awake and my body cannot function. But at least I got those 2 months. It will improve for you and hopefully those improvements will last longer. Sending you hugs x

Yes, I am tired of all the tests that come up normal and so I am healthy! NOT! There is nothing to see, I look fine. Yes, some days I feel really good and then others like today I can barely stay awake, head feels strange and legs feel like jelly! Yes the medical profession is expects Dr's to be able to care for a person in a 10 minute consultation. When one has had a serious illness 10 min consults just don't cut it. Then also it could be longer, but still they have not done enough research about the long term effects of Meningitis. Very grateful for your reply and this support group, would be feeling very crazy without it. <3

Scouse2020
Scouse2020
in reply to menchild

I completely agree!!!

As mad as it sounds it was good to read this and all your symptoms as I'd started to believe I was making it up and losing my mind!!! Very grateful to read... just sorry there others suffering it there like me and really not getting listened to at all!!!

You are absolutely right of course, it's actually hard to believe that so many doctors and neurologists are so disinterested and dismissive when we are desperately seeking some sort of help for the lingering after effects of meningitis. My own GP flatly refused to see me when I was lucky enough to be offered a telephone consultation three weeks after leaving hospital. When I did finally get to see a neurologist six months later although I still couldn't walk and had numerous other symptoms he simply stated that the scans and blood tests had all proved negative and the only thing he could offer was Amitriptyline. It appeared to me and my partner that he assumed I was malingering being some sort of hypochondriac with mental problems. I found a private physiotherapist who had experience of treating people with dizziness ,disequilibrium and balance problems who guided me through a programme of exercises which did help me in trying to learn to walk again. The most important thing was the fact that she actually listened and told me of patients she had seen and helped who had been completely dismissed by the medical profession. It does seems that unless something very significant shows up on the scans and diagnostics it's a case of 'case closed' whatever your circumstances might be.

0101
0101
in reply to kalirachi

It's much easier to believe when you can read how it happens to so many of us. It's why this forum is so helpful as it seems such a well worn route many of us still have to end up struggling down almost by accident. Recovery should be a source of pride and relief and positivity but it's so often such a battle. And despite not because of some providers. I ended up bouncing between clinicians signposting and me getting very lost. I forget I walked with a walking frame at first and many were quite happy to leave it at that without even seeing if any more progress was possible. It's salutary to read that others are earlier on in recovery. We need the hope and support to keep pushing forward. Guided physio or interventions can often be that much more effective.

Reading that the listening is the bit that's missing - how can anyone assess any situation without it??!! Persistence and strength eh. Very glad you found the private physio and that she was honest enough to say what she did. More of that please!!

menchild
menchild
in reply to 0101

Holistic care is what we need! I am seeking outside the medical model now and getting a lot more respect, feel heard and cared for.

Flo1108
Flo1108
in reply to menchild

I’ve been seeing a naturopath who has been a life saver for me! If not for anything else, but just that she listens to me and makes me feel like I’m not crazy.

That's entirely understandable!

Please keep going - it's really not you. It's them. If you are lucky enough to meet the odd clinician who 'gets it' it makes all the difference - please read and reread the other responses here to see it really isn't an issue with you - it's a lack of experience and understanding from them and happens across healthcare but especially for certain diagnoses or things not so 'obvious' or that take a little more investigation. Basic human interaction and politeness goes a long way and takes no more time or effort. Being able to have a conversation should be far higher up the training programme as it's often the best and simplest way to diagnose what might be up - and more importantly the impact and effect on your life and day to day function.

It's not the whole medical or health profession but I have ended up being glad tests came back with negative results after a while after putting up with disbelief and many poor interactions. Proof at last! Oh hang on...

Daft really, that it's easier for some on the clinical side to deal with tests showing clear answers, even if they are negative, than the unknown as it seems to challenge some who need easy answers. Life isn't and neither is the human body. It's the way the system is set up and we're funnelled through to people perhaps without the time or experience to see what's in front of them or the wider patterns ie us. When we are delicate or vulnerable through ill health it means any insensitivity or curtness has that much more of an effect. Stay as strong as you can and be as kind as you can to yourself x

menchild
menchild
in reply to 0101

You are so right. I feel very vulnerable. I live alone and at times feel so unwell and fearful of passing out that I get my daughters and others to send me messages every hour and check that I am ok. The brain is the master of the whole body and there obviously is not enough research that has been done to study the after effects from Meningitis. There are no answers from the medical model and some of them have no bedside manner!

The doctors don't know how to help you. It's been 40 years since I had BM and when the doctors see it on my medical records, they can't wait to move on. I think it's because there are so many DIFFERENT AFTER EFFECTS. For ex, my remaining after effect is foot pain. I think the only reason the doctors believe me is because my feet are obviously mangled and my "toes" are different lengths (from the severe gangrene). They look at my feet and say something like, "Gee, it's amazing you can walk," and then quickly change the subject.

menchild
menchild
in reply to ignoreit

Until you have had the illness you have no idea. I don't have any obvious signs that I have had this illness and look ok. I don't feel ok. To be respectfully heard would be part of my healing. I am not going back to any Dr who can't at least look at me during a consult and acknowledge that I just told them something about my health struggles. Thank you for being here and taking the time to respond, so appreciated. <3

Gave up on them years ago they useless and getting worse.

menchild
menchild
in reply to Bugalug

Yup I am seeing that and now am finding great relief with Bowen therapy and am taking homeopathic, vitamins, minerals and probiotics and getting great relief. Drs are not the only health practitioners. They were lifesavers in acute phase of this Meningitis and then were unable to support me with long term recovery. So stopped looking to them now but grateful they saved my life.

HiddenThis reply has been deleted
menchild
menchild
in reply to Hidden

The Drs really dont know and just blab from text book training!

kalirachi
kalirachi
in reply to menchild

Some doctors and neurologists have been blessed with humility which assists to some extent in ameliorating their lack of understanding regarding the after effects of meningitis. It's really the pompous and arrogant ones who need retraining, not so much in the medical field but in the way they treat their patients.

menchild
menchild
in reply to kalirachi

Some training in good communication skills wdnt go astray :)

HiddenThis reply has been deleted
kalirachi
kalirachi
in reply to Hidden

Although the problems no doubt still persist for you, perhaps you've been fortunate in some ways by encountering professionals who have some understanding and compassion. For most people once they have survived the initial onslaught there seems to be the ethos of 'case closed' regardless of however long it might take to make some sort of recovery or in some cases not. The depressing reality is that once you've been discharged from hospital you are on your own with no after care or support whatsoever. Anyone who continues to seek help is regarded as a malingerer or hypochondriac. It seems their only way of dealing with this is to prescribe antidepressants. Radical change and a complete revaluation of this totally unsatisfactory state of affairs is desperately needed. Good luck and best wishes anyway!

Feeling the exact same chick xx

Your best bet is to find a neurologist, GPs have no clue about brain trauma. I work in the medical field so I have an understanding. My neurologist has me working no more than 6 hrs a day, if I even try I lose my cognitive skills and cannot function properly with pts. Find someone who has experience with acute brain trauma. Good luck

menchild
menchild
in reply to Buckie3

Been to a Neurologist who told me I was having TIA’s (mini strokes) and ordered more tests - blood, heart tests and told me it had nothing to do with Meningitis! Just over them all in medical model!

Eli_Acct
Eli_Acct
in reply to menchild

I'm so sorry... very aggravating. You're not alone.

0101
0101
in reply to menchild

Just read this menchild - thinking of you and getting through all this.

menchild
menchild
in reply to 0101

Thank you 🙏 for caring. I am doing ok just resting a lot and now test results from bloods and carotid arteries doppler (ultrasound) all clear. Nothing shows up but I have had no more TIAs (mini strokes) for 8 weeks now. Taking a natural remedy to thin blood as aspirin caused side effects. Found a new GP who is lovely n understanding😀

0101
0101
in reply to menchild

Keep resting and no more TIAs is really great news. And new lovely GP?? Hooray for you and for them too.

Look after yourself :-)

menchild
menchild
in reply to 0101

Bless you 💖🙏

I saw my neurologist, asked if I could do acupuncture, she told me it wouldn't hurt (i'd consult your doctor). I got VM 5 months ago.... and acupuncture is the only thing that has helped me feel like my old self! Or at least closer to my old self.

It's worked miracles that prescription drugs didn't! I was on gabapentin 300mg at night, then they doubled it. They also prescribed me fioricet and that didn't help. I stopped taking everything since it wasn't actually helping. Acupuncture has given me my life back!!

menchild
menchild
in reply to Eli_Acct

Thanks Eli_Acct, I am finding Bowen therapy is giving me my life back! I have 3 sessions now over a period of a month. I am feeling so much better after each session and in fact pain in my right shoulder/neck that has been with me for years has gone! Drs are limited in what they can offer - mostly they only offer pharmaceuticals which all have side effects - some worse than the illness they are supposed to be helping! I am also taking some homeopathic medicine which is helping me deal with all the grief around this illness. Thank you for being here and understanding, it has helped me beyond belief.

Eli_Acct
Eli_Acct
in reply to menchild

Wow, this is the first time I've heard of Bowen Therapy! Very interesting!! ... I'm reading about it now. Hopefully you'll be getting better and better quicker and quicker! :)

menchild
menchild
in reply to Eli_Acct

It is so gentle and releases all the trauma held in the body. My therapist has also taught me to release stress from my mind as soon as stressful event has passed. I had Bowen in past for frozen shoulders - works super fast! You dont need endless sessions either. I will have monthly sessions for the next few months to keep momentum going. 💖

I got bacterial meningitis 2 1/2 years ago while on a cruise. I fell into a coma and rushed to a very good hospital when we docked back in home port. My family was told there was no hope of survival, but by the grace of God, at 61 years old I survived. A 21 year old brought in at the same time with the same thing did not.

It took many weeks in the hospital then many weeks of rehabilitation in a center, then many weeks of outpatient therapy just to get back to walking and functioning.

But the fact remains that I still have side effects from the disease. Eyesight and hearing has diminished as well as being unsteady on my feet. I also suffered a blood clot behind my left ear at the same time so I had Bells Palsy, which left me with a slight paralysis on the left side of my face.

I have also been blessed with great therapists and doctors, even my GP who monitored me daily when I first came home and was on blood thinners, until I was cleared, after countless tests, to stop the blood thinners.

There are many days I wish it would

all stop, tired of seeing all kinds of doctors, knowing I still need help to go up or down on a curb, having to take a break while walking because the legs get wobbly and I can't go any further, having to go every 6 months for mri's, cat scansblood work, etc.

My problem is me more than my doctors. I am the one who has to realize that I have this problem and I have to deal with it accordingly.

I wish you all the best. Accepting the situation is the best medicine. I also hope you find caring and concerned health care providers. They have helped me.

Thank you for sharing. Wow you certainly were impacted severely. I have started to accept that I can only live one moment at a time and that I dont know if my life will ever be like it was. I can just enjoy what I have now - this moment and the simple things are the best. It is a gift to have survived at all. 😀 I am finding more support with complementary and natural healing remedies and modalities. You are blessed if you have good medical practitioners.

I am so sorry to hear this, but please don’t take it personally, it happens to most of us just visiting the GP. Btw I am just diagnosed as ?VM (most likely VM but not conclusive). It’s the story of my life! GP’s don’t have time, most are just stressed out themselves if you think of it that way you will realise what is going on. I can really empathise with you. In my opinion any one going through this is going to have big issues. You will have a complex scenario of symptoms. I will be trying some talking therapy when i get a bit stronger. This thing feels like a brain injury and so needs appropriate rehab. If you need to talk through it at least they will listen. As for meds’ I am sure a support group like this will have suggestions. The people on a health forum often have a more in-depth knowledge than a general practitioner. Armed with your information go to your GP, make notes, take med suggestions. Unfortunately I have found you have to leave emotions at home, there is not enough time in your gps appointment to cry and it will make you less able to get what you want. Hope that makes sense, sorry if I have written a load of tosh, my brain is very poorly, writing is like running a marathon. Take care xx Sorry just realise I am posting on old post. Blame the brain. However I will leave it unless it helps anyone else. Btw any advice for a newbie appreciated. I can tell already this is going to take an absolute age to get over, how anyone can go back to work with any of this needs a medal. Off to lie down now...

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