When people don't understand Mono?

Posted , 9 users are following.


This is mainly just a rant topic. 

Since having this virus, and opening up about it to a few people, only two fully understand what mono is and how it works. 

I've had some friends think that mono can heal itself within a week or two. 

I've had people thinking that they have caught it from me within a week. (Even though no contact with salvia was performed). 

It kind of annoys me, as my symptoms have now come back, and I'm still struggling. Every day, I pray that today will be the last day. Sometimes, I wish it would just kill me so I don't have to wake up to another day in pain. (I know that sounds a little dramatic). 

Have you guys experienced anything like this while struggling with mono?

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31 Replies

  • Posted

    Awww don't say that 🙁. I know exactly how you feel though !! It's such a challenge. Message me anytime you're feeling down 

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    • Posted

      I don't mean to come off as all depressed, because I'm not. It's just so infuriating and I kick myself everyday. I used to be able to spend hours outside of the house on weekends going shopping, but now I can only do one-two hours. sad 

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    • Posted

      I do the same , which is why I can't offer too much advice. But I do know exactly how you feel. It's terrible sad ughhh it's getting hard to even imagine my life returning to normal 

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  • Posted

    Butterfly x


    dont feel like you're the one that has felt this way, I feel like a lot of people just can't understand what it is, some people have looked at me and I'm sure they think it's in my head or I should just get on with it. Or it helps if it's sunny rather than rainy?!? 

    I would have times when I thought I was getting better and then bad days strike again, I so understand how you feel and how depressing it is and that you just want to be normal again.

    a year tomorrow, I woke up with a sore throat. 6 weeks later I was diagnosed with gf. Then 4 weeks later it properly kicked in and I was in bed for weeks.

    8 months in, so August time I had a bit of a step up and now I am really really good, having fantastic days, doing normal stuff, hopefully after Christmas I'll be phasing back into work. So really it has been a year in all. The worst year of my life...to date.

    this won't last forever for you, it's hard now, really hard. I found the low/depressive moods horrible, lots of tears followed.

    but like me, you will recover, definately. Definately, believe you will.

    caroline x

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    • Posted

      Thanks for your story, reading about recovering stories really does give hope that it will disappear. 

      This is a bit off topic, but did doctors check up on your process every couple of weeks? So far, I've had three blood tests to check for the same things over and over again. Feel like a right scientist experiment. 

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    • Posted

      Awww, Christy, you're sweet💖

      Its true... I've laid in bed, watching telly, iPad in hand, day after day, reading other people's stories, hanging on to hope when it'll be my turn to feel well. If I'll ever be well again?? Life becomes normal not feeling great, having to see what tomorrow brings, just not knowing when!??? Just WHEN and then when that good day comes, I'm then waiting for the bad to follow. Loads of times I've trudged back upstairs or had to go back and lay down.

      those days don't seem to be happening now - hoorah!!!!

      ive sometimes had to think, well, I can't do much so I'll lay here and try and own it, thinking that this will pass. I find it also hard explaining to people when they say, how are you feeling??

      after many replies I found that, yes, I'm good so far today, but who knows?! Because sometimes I just didn't know how I felt.

      i still get a bit tired, but not exhausted and breathless, no where near.

      always hope.



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    • Posted

      No, my gp only tested for gf the once I think.

      ive had other tests like an mri, and an ultrasound and a test for addisons, but no more blood tests.

      all gp's are different I suppose and maybe it's different as I'm in the uk?!


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    • Posted

      Ahh nice!

      not sure why my gp hasn't tested me again for gf?! I did ask once but she said there wasn't much point? As I'm getting better I suppose I don't need to now.

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  • Posted

    My doctor told me last November I had mono and then that was it, no mention of it ever again. I thought it was just a bad flu and I thought I got over it within a month.

    Since then I've been so sick, one thing after another and I had no idea until recently that it could still be the mono 😣 my doctor has sent me for sooo many tests and he's been freaking me out thinking there's something really wrong.

    Honestly I thought I was dying many times through out the past year!

    But I'm going to ask him on Tuesday could it still be the mono virus causing all this coz they forgot that I even had it I think.

    I've been seeing a holistic doctor the past 3weeks and she asked me ro

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  • Posted

    Sorry posted by mistake. She asked me to go back to the beginning when all my problems started. So I told her I had mono last November and then listed every other thing that followed since and she believes that the virus is still in my body..

    So I'm really hoping I'm gonna get better soon. I've already started to feel better slowly over the last two months so fingers crossed my battle with this virus is coming to an end.

    I understand how you feel. I've had days where I feel anxious or depressed. I've cried a few times. This virus hit me when my baby was a week old so it's been so hard and with a toddler and a baby I have not been able to spend even one day in bed to try and re-build my strength.

    All I want is to get back to normal so I can enjoy life with my children and I'm slowly getting there.

    I hope you feel better soon ?

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    • Posted

      Wow, backtome,

      much respect to you!! With a toddler and a baby??! I found it hard enough just having a baby let alone if I had gf and a baby.

      at my worst I used to think about other people getting gf, then I thought about being pregnant with gf, now bad must that be?? I have children but youngest is 6 so they aren't as demanding.

      youve had gf the same length as me and it was two months ago when I started feeling better....now I'm feeling much better, things are on the up, for both of us, it's great to hear. Having a baby, sleepless nights is especially hard.i feel for you. I really do.

      but you'll keep improving.xxxx

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    • Posted

      Thank you. This past year has been a blur tbh. Lots of bad days but good days too 😊 I think we will both be glad to see the back of 2017! It's been a roller coaster but my little family has kept me going ?

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  • Posted

    Hi Butterfly,

    ​I think we have all felt this way battling this virus. I am just starting to feel like myself after one year, I started feeling better at 6.5 months and had a month long relapse mid July. I know at this point it feels like you will never get better, but you will. 

    ​This forum is a great support and it helps to come here and talk to others who have been through it.

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