Newly diagnosed teenage daughter



  • My 15 year old daughter (Victoria) has recently been diagnosed with CFS. The info on the site has been really useful, especially the facts sheets and this forum. I have also registered for the waitlist for one of the community support groups.

    Our experiences with trying to get a diagnosis has not been great to far. It has taken nearly 3 years to get here. In that time we have gone to multiple doctors and specialists, she has had numerous tests including blood, CT, MRI and she even had grommet and sinus surgery. In all that time CFS was not mentioned.

    Too be honest, I am also scared for her. I assumed all this time that this was something she would recover from, but what I have read so far is that most people learn to live with it. So this diagnose has come with mixed emotions, it is great we finally have one, but now as a mother I am grieving over what she may miss out on (I am giving myself a certain period of time to do this, but then I want to focus on what she can do)

    To help us through these early days, I thought it would be good for her to go to someone who understands CFS. But I live in South Australia, and from an internet search, I cannot seem to find a doctor that can help.

    It would be great to get some info/advice on what supports there are in SA for CFS. Too be honest, I also would really appreciate it people would share their stories about how they flourished with CFS.



  • @sam0305 said in Newly diagnosed teenage daughter:

    My 15 year old daughter (Victoria) has recently been diagnosed with CFS. The info on the site has been really useful, especially the facts sheets and this forum. I have also registered for the waitlist for one of the community support groups.

    Our experiences with trying to get a diagnosis has not been great to far. It has taken nearly 3 years to get here. In that time we have gone to multiple doctors and specialists, she has had numerous tests including blood, CT, MRI and she even had grommet and sinus surgery. In all that time CFS was not mentioned.

    Too be honest, I am also scared for her. I assumed all this time that this was something she would recover from, but what I have read so far is that most people learn to live with it. So this diagnose has come with mixed emotions, it is great we finally have one, but now as a mother I am grieving over what she may miss out on (I am giving myself a certain period of time to do this, but then I want to focus on what she can do)

    To help us through these early days, I thought it would be good for her to go to someone who understands CFS. But I live in South Australia, and from an internet search, I cannot seem to find a doctor that can help.

    It would be great to get some info/advice on what supports there are in SA for CFS. Too be honest, I also would really appreciate it people would share their stories about how they flourished with CFS.

    Hello @sam0305 and welcome to our community. I am finding this site a very good place to be, whether feeling downhearted about this dam illness or as positive as possible.
    It’s certainly ok to feel both! I think it’s important, as you say you need to give yourself time to grieve and it’s a process.

    It is a roller coaster ride of which unfortunately you have already been on with your daughter! I really feel for you.
    I am hoping someone here can direct you to a good Doc that has an understanding of ME/CFS.
    It’s such a help if you have someone to support you through this, to direct you to the right people. It also took me 3 years to find that person, so please don’t give up they are out there. Hopefully on here you will get plenty of tips.

    To give you some hope my understanding is that many who are young that get the right knowledge about what’s good to do and what is not, have a much better chance of progressing well, so please do not give up heart completely.
    While many of us on this site are long haulers there are also many that recover well enough to live a full life!!

    I will be hoping and positively putting that vibe out into the universe for your daughter and for your family. As it has so much impact on everyone.
    I do hope your daughter has friends she can confide in?
    Hopefully on here if she is up to it, she may find a young group to be apart of as well.
    I also hope that you have some support from friends/ family as well, as that is so valuable.
    We do need those very few special people who actually believe in us!! It helps
    Even if they do not understand the illness, as it is very difficult for people to grasp, considering they cannot see it.
    Which is ironic really, as that’s why they don’t see it because your daughter is to unwell. A huge gripe of mine...🙄 anyhooo I shall move on....
    Also another positive is the research they are now doing is great they are really starting to take this more seriously in places and are finding more answers and similar things that all of us ME/CFS people go through.
    COVID has helped push this along. You will see many articles here about research and if you get the emerge research digest email delivered too. I think that is what it is called. There is info about it here somewhere if you do not already receive it.
    I will look forward to hopefully seeing improvement with your daughters health and for all of us here too.

    We shall never give up. 🤗



  • @sam0305 we are not supposed to publicly recommend doctors on here due to legal/liability reasons, but we are allowed to use the private chat to discuss such things. I don't live in SA myself, but I know someone who does and might be able to pass on some info 🙂



  • Hi @sam0305 sounds like your daughter is already getting two of the most important ingredients to get through the early stages and that's support and understanding from loved ones. So glad you're here and hope it helps.



  • @river of course that makes sense, I should have realised. Thank you so much 🙂 I would definitely appreciate any help I can get



  • Welcome to the forum! Sorry to hear about your daughter, I'm glad she has you in her corner. Belief and understanding, especially from family, is so important.

    I was diagnosed when I was 16 and I think I'd already been sick since I was about 12. I was at the severe end for a few years, but over a period of time, I improved to the point that I could complete a uni degree and work full-time (with on-going limitations). I don't know why I improved, it just seemed to happen naturally.

    Because I knew what it was like to be severe, I made the most of my years when I was only mildly affected. I managed a couple of overseas trips and enjoyed a successful career. I said yes to things like concerts and weekends away when I could manage, knowing that if I became severe again, at least I'd have some good memories. Unfortunately, I'm back to severe and unable to work, but I'm in a better position because I was able to work for about 14yrs. I have a much better perspective being sick as an adult, than I did as a teenager.

    Everyone's journey is different. I accept my current situation, as best as I can, but I hope that there's something better for all of us in the future.

    Only thing I can add is, if there are any ME/CFS groups for young people in your area (or on Facebook), get her involved. Having contact with people who are of a similar age, going through the same experiences, is invaluable.



  • @Tess This is amazing, I read this and it just made me feel so much better. It is quite overwhelming at first. Support groups such as this are so important, you get to hear from people who have experienced the same things.



  • @gretch thank you, I am hoping to learn as much as possible from the community, but really glad people are here to listen as well 🙂



  • @Coggles77 thank you so much for sharing that. The acceptance is something that I see as the hardest part. Yet I also know that it one of the most important. I also have to get Vic to that point as well.



  • Please to meet you, Sam!



  • Hiya @sam0305 , my 15yo daughter has also been diagnosed in the past two weeks. I totally understand your grief. TBH I don’t think I have any clue what this means to her or us as a family going forward.
    Best wishes to you and your girl x



  • @MamaC I am the same. I am just glad we have Open Access College as an option so she is able to do school. Then what happens after that we will deal with when we come to it. Not being able to help is the most frustrating thing


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