Long Term Glandular Fever

Reader's Comments

  When I put these pages up, I did it for myself. I was (and still am) aware that they could be taken as being a bit of a negative viewpoint. However, I decided to put them up because they were the truth, unvarnished and unembellished. I have been very surprised at the reaction they have produced.

  Firstly, they've generated a load of mail, 99% of which has been positive. Secondly most of that mail has come from wonderful people who are equally debilitated by this illness.

   I've received literally hundreds of messages from all around the world from people with the same condition. While I wouldn't wish this illness onto anyone, I have to admit that hearing from others has been of great comfort to me.

   I present here a few quotes from the mail that I have received, reprinted with the writer's permission but with all identification removed.

   The people who write:

Hi James.

I dont normally write to complete strangers but i just want to tell you i know exactly how you feel. I'm now 19 and got glandular fever 3 years ago and only now am i starting recover and feel human again. People dismiss it as a flu like virus and for many it is but for me it was very different. I was in hospital for weeks needing intense treatment, everything that could go wrong did. not only does it have a lasting effect on you but also your family.

I hope now you are starting to feel slightly human again and i think what you have done here is great. All the best.

I just thought i'd write to say 'Thank God, there is someone who understands!!' I first got glandular fever 2 years ago and havent felt right ever since. Being 21 and at college it really doesnt help, especially when none of your friends and most of your family dont want to believe there is anything wrong with you, and tell you that you have just got another cold. I wish I could say that the doctor was some use, but not a chance!!!!

I hope that other people read your site as it is comforting to know that your not alone!!

I had Glandular Fever about 10 years ago. I've had nothing but bad health since then. The worsed of it has been this year. In total I have been ill 1 week in every 3 for the past 6 months. What a life.!!!

I have been moved so much by what I have read, James. I had Glandular Fever almost 13 years ago and I am glad to write that I am a different person now. The physical pain of the virus was so much that I have managed to blot it out for this long. I remember being in tears with the muscle pain...

I have had glandular fever four months ago and i am still no where near over it and i really do feel for you in your situation . Not only is it physically and mentally draining it drives you crackers. Four years ago i went through major surgery on my hip and i can tell you i would rather have gone through that again than have had this awful disease. Don't give up thats all i can say

Thank Goodness - I'm not alone!

I've just within the last 15 mins had another test for GF confirmed and it's well and truly peeing me off. Every Winter for the last NINE years I've had this sucker (I'm 18 now)- I missed all my end of term exams at school one year, nearly dropped out of school the following year...

I caught glandular fever last August. I am in the middle of my GCSE's so it is a bit of a problem. I am so rundown that for the second time, I am out of school taking anti-biotics to get rid of my chest infection, and my circulation is bad that my nails go blue. And I don't even like the git that I got it off, he just laughed when he found out.

I am managing to keep my head above water most days, but at 21 years of age it sometimes gets too much for me and I just want to get out there and be 'normal'. Occassionally I try, only to fall back in a heap for a few weeks.

   I was diagnosed with Glandular Fever last August. My doctor was great, my family and friends too.... for a while. My doctor told my family that it only takes 3 - 4 weeks to recover, now everybody is telling me to get over it and stop looking for sympathy.

   Christmas was especially hard, when I decline an offer of a drink they keep telling me to drink it "it's only one, it won't bite" - what they didn't understand was that I would wake up the following morning feeling like I smoked 500 cigars and drank 500 bottles of vodka the night before - even after just half a drink. When I left parties early because I couldn't stay awake any longer - they thought I was just looking for attention. Going to shopping centres was like mission impossible, when I was in the middle of a crowd I felt like I couldn't breathe, I felt very hot and like I was moving in slow motion while everybody else was running past me and sometimes through me!!

   Since August I have lost contact with a lot of friends because I can't socialise: this started a depression. Normally I am a positive person, I joke and laugh a lot, and find it hard to take anything seriously - this was the case up to a few months ago!! Losing friends, being constantly tired, crowds, no social life, getting stressed out over small and stupid things - these all depress me and leave me very near to breaking down, but I find the most depressing and confusing part of GF is when people don't understand what its like. My father thinks I am lazy, I sleep an average 12 hours a night, I don't work out any more and I don't socialise.

   My friends, especially get on my nerves, they can't understand that all I want to do is sleep, I don't care about parties and nite clubs anymore, and the more they 'nag' me the more depressed and alienated I feel. I have more than once considered suicide (at least it would put an end to the confusion and pain) but without knowing it a close friend has kept me sane - thanks "chesty".

   I never mean harm or ill feeling to people, but lately I find myself thinking I wish they (family and friends) had GF, then they'd understand. The truth is I would inflict death upon them quicker than GF, at least they wouldn't suffer as much!! The only thing that has lifted my spirits in the last 5 months was coming across your website. Every other site about mono or GF seemed to say after 4 weeks you're okay and back to normal, obviously written by doctors who never suffered GF. I apologise for 'going on' but it is such a relief to finally come across someone who understands. Thanks

   Medicine:

   Unfortunately many of my correspondents have had the same dismal reaction from the medical profession. To be honest this is the part of my illness that I resent the most. The systematic denial of all my symptoms, one by one (yes even the ones you can see with your own eyes), has laid greater weight on my already crooked frame.

   I wish I had never mentioned this problem to a doctor. It has done me harm. Here's what some of my readers wrote on the subject:

your comments about doctors really struck a chord. I'm lucky to live near a good kidney unit, and most of the doctors are good, but some are nightmares. A few years back I told one of the doctors that I was feeling tired, and he turned around and said "No your're not." just like that, as if he knew better than me how I was feeling!

I had my first run in with GF at 14, quite a nasty attack but came through with flying colours. Now I find myself at the tender age of 24 not quite being able to get through a normal day without falling asleep at my desk. After 3 visits to the doctor without any answers except "You're depressed" I finally demanded blood tests and they came back positive for GF.

The mail I have recieved has given me new strength when dealing with the dismissive or suspicious medical profession: now when they give me some old line about it being a 'state of mind', I can point to the fact that my state of body is shared by over 500 people that I know of. Their belittlement itself looks small in comparison!

A doctor from the US writes:

I have a number of patients with Chronic Fatigue. It's a frustrating, annoying, aggrevating condition (disease) that physicians tend to lump together with other frustrating, annoying and aggrevating conditions; e.g., drug seeking, chronic back pain, migraines. These take a disproportionate amount of time to diagnose and treat properly. Patients are difficult to treat, because they expect a magic pill and have difficulty believing that lifestyle changes may comprise a major component of their therapy.
I agree that many physicians do the "blame-the-patient" thing.

  (Btw: Kudos to him for managing to see past my anger on this site and through to the relevant points).

   Worse off.

   Lots of people seem to have had a worse time than me. Some have written of hospitalisation and severe complications. While my illness has been extremely protracted, it is fair to say that it has reached a certain level and no further. Perhaps this is because I have never forced the issue, perhaps this is because by that stage I am no longer able to force it! Maybe I was just lucky.

I would just like to say thankyou really. I was diagnosed with Glandular Fever when I was 17, I'm now 19 and feel that everyone who was sympathetic now thinks I'm just lazy. When I first got it I had to go to hospital because it was so bad but now 2 years on I mosly just lie in bed all day wishing to god it would go away and leave me alone. I have had reacurring bouts of tiredness which had for a while left me, I even managed to get through my exams and get to a really good university. Now however I am home from university awaiting another set of test results and wondering if I'll ever be able to go back. It was just nice to know that it wasn't all in my head like I was beggining to wonder and there are other people who have been affected by this virus and for more than a couple of weeks which I am told is when it SHOULD have left me.

Negative responses:

I get a few negative mails about the site - far fewer than I'd expected for a site with such an overall gloom! Most of the messages refuse permission to be published here on line, but here's a few examples, the first is a quote, the second I am to a certain extent paraphrasing.

you are an idiot
i really feel for you you invocile you are deadset kidding yourself you idiot
have you ever heard the word malingerer because you have an acute case of hypocondriactis.

Get off your fat arse.

Here's my general reply to this kind of thing:

Thanks for your mail. I'm glad to hear that you haven't had the life experiences necessary to relate to my mine. Feel free to apologise if you ever do.

  The trouble is they hardly ever leave a valid return address! :)

   Reader's Self-Help tips:

   During my email correspondence I hope that I've been able to pass on what little I do know about dealing (or living) with this illness. I've condensed most of what I have written into the Living with the illness section of this site. However, here's some of the advice that I have received from other people:

Thanks so much for your site. I was just surfing tonight to see if I could get any info on GF. I had ANOTHER blood test today to try and catch the wretched thing so at least I could get a diagnosis (although I don't think there's a lot they could do about it if they managed to give it a name. I was considering calling it 'pain in the neck/throat/hair/legs/stomach' at least the name actually means something...!).
I started having tests when I was about 13, I'm now 25 and no nearer a 'medical' diagnosis, although a few years ago I had a really bad bout and my homeopath really helped. I didn't have time to read all your site, so I'm not sure whether you've tried this or if it helped you, but if you haven't tried it, I'd recommend it. My sister had diagnosed (wow!) GF, and she spent weeks off of school (she was about 14 at the time) but found her recovery a great deal faster when she saw Sue, or 'witch doctor'. Just thought I'd let you know, and to say that your site really helped!

I recovered from glandular fever [symptoms] after giving up dairy products, this was something I did after reading lots of information about food allergies. I felt like a different person after I changed my diet. I no longer felt tired, achey, no longer suffered with sore throats, swollen glands and high temperatures and no longer needed 12 hours sleep a night. Now, if I have milk or cheese the symptons of glandular come back, so I keep off them and feel fine.

   Feelings of Loss.

   'Feelings' of loss? Stuff that! This is real pain caused by real loss. One of the cruelest tormets life can throw is to loose that which you have. To loose one's health takes so much from a life that it must be recognised, must be spoken of. I have been shown that to grieve for one's lost activity is healthy in itself. However, one must also work to replace that which has been lost. Here's some messages where the writer describes some of the things that they have lost to this illness, I hope you can see just how valuable they were - and how much work needs to be done to replace them.

Yes, I know I've only had it 3 years, but already it feels like a life time. The activities I used to do...cross country running for my county, gymnastics, ballet, trampoling and athletics, no more. I'm lucky if I make it for lectures.

I have CFS and i have no friends any more. I was popular. Sure i went to parties for a while after it but it didn't work.

I miss my life. I miss my self.

Reading your poems and pages was like reading some of my own life. You are not on your own. Glad you could find a way to relieve some of the feelings of what you have lost, I feel like shouting too, and screaming sometimes, when I have the energy. I am still working on how to deal with it. If I ever find out anything positive, I'll let you know.

Depression.

It can get to you in the end. Somewhere along the line you are probably going to get depressed. In the short term I see no particular problem with it: It always seemed to me to be a very appropriate and logical reaction to the loss of one's life, one's career etc. However, since the immune system seems to rely on a positive attitude to some extent, it is fair to say that depression isn't going to be of much help to you physically or mentally - in the long term.

It's frustrating when you know in yourself how depressed and utterly destroyed you feel and the only people who can empathise and understand are fellow sufferers.

Anti-depressants.

My docs answer to everything is to perscribe anti-d's. supposedly to make me feel better but on the side effects it says it may make you sleepy,well I don't want to be any more sleepy!!!

  There's a lot more discussion about the depressive effects of the illness on the Living with the illness section of this site.

   The site:

   Finally I'd like to end on some of the postive comments this site has generated. I've always been a bit ashamed that I have spent so much effort on such a depressing and self indulgent topic, however many readers have written to express their thanks and encouragement for the site. I hope this means that my efforts, while on the surface apparently negative, even grim, were actually still efforts and worth something because of that fact.

  THANKYOU!

   That was my first reation after reading your web page about glandular fever. My second was the utmost sympathy, I too have got the illness and have suffered the "get of your lazy arse" reaction from various friends and aquaintences (I use the term loosly!).

   It was such a relief to come across a page that was so personal in the midst of all these "its a typical teenage problem - eat yourself better" styled pages which only seem to underline the fact that very few people know what they are talking about and if they do don't have any worth while solution!

   After 3 1/2 years I seem to have gone down every possible path from nutrition to I.V.s, (and yes somewhere in there I too was given anti-depressents, obviously an original GP!!)and none of it is the "magic" cure, all I can say is that you are not alone and are doing a fab job just having this page available because as u know the illness is very isolating & it's good to know other people are out there!!!

   Hope you feel better

   p.s if you DO find something that works, LET ME KNOW!!!

your website is like a breath of fresh air to me! this is the first time i have read about anybody who has shared the same type of experience, for so long as i have , from the age of about 12 yrs old ,i had glandular fever that was undetected for several years until i was finally diagnosed with glandular fever, by then i was so weak and ill i was admitted to hospital with a swollen liver and a spleen the size of a football, but it wasnt until 15 years later that i was properly diagnosed with post-viral-fatigue-syndrome, after years of severe muscle pain, uncontroliable fatigue, deppresion, etc etc etc, and that was also after hepatitis, myocarditis, and every other possible infection you could think of, sore throats every week ,swollen glands every week, no one helped me! all of my teenage years are just a blur, i lived it! but only half awake!! i ended up finding some comfort in alcohol when i was younger and ignorant, just to get a little relief from the muscle pai!n, but of course this was not helping me at all, there is so much more i could tell you, but i just want to say that i am glad i have finally found someone else, who has some idea what it is like to live with this illness for so long, i am 38 yrs old now, thank you for lifting my spirits a little with your superb website.

My heartfelt thanks to everyone who has taken the time and energy to write to me over these last few years. If you feel you want to drop me a line, you can do so with the 'Quick Mail' button below. If I'm honest, I'm getting slower in writing my replies - there's a lot to do and its all to easy to get behind. However, just about every single writer has had a reply of some sort - albeit a little late in many cases! (Apologies all round). I'll write here if and when it becomes too much work for me to cope with.

Until we speak again, my very best wishes to everyone with this illness: Firstly for a speedy recovery, but until then for understanding from those around you.

Take care,

James/.

A page from James David Chapman's website. Located at: http://www.users.globalnet.co.uk/~jchap/ Site mirrored here at: http://www.j.chap.btinternet.co.uk
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