No-one Understands

Had my occupational health appointment yesterday, plus a doctor's appointment, and had my second injection this morning. I find no-one seems to understand what I'm going through. They just see it form the clinical side - which I know is helpful to a degree. But in my OH appointment she just kept frowning or, dismissing when I said I was scared (don't get me wrong, she was absolutely lovely), but whenever I said I was worried because there's no cure, just a treatment etc. she just kept dismissing it and saying that 'it's only a deficiency, it'll work'. It's so difficult to try to get across to people how much of my lie is dictated by this illness. She even mentioned that at 23 I was incredibly young to have this condition and she hadn't come across anyone that young with it, which didn't help as It's hard to find support and experiences from people who have it this early. I'm worried that people just can't understand what I'm going through. Even my mum - i know she means well, but she is a tough cookie - says "You just need to get your head together and get over it". If it was that easy, I would do it straight away. She uses my brother as an example who is diabetic and Coeliac and says he's over it. But he was diagnosed several years ago so he's had time. I was diagnosed 2 months ago and people expect me to ignore it and just live my life. Not sure where I was going with this but just needed a rant.

6 Replies

oldestnewest
  • Hello Moosey well done for such a clear and understandable rant but your OH lady was absolutely right when she said 'it's only a deficiency, it'll work'.

    I "lived" for nearly 40 years in complete and utter ignorance of what P.A. was all about. Neither my succession of doctors or nurses (who gave me my injections) ever asked me how I was coping and I didn't know anyone else who had it.

    Thanks goodness for the Pernicious Anaemia Society which I "discovered" six years ago and this forum where there are so many lovely people who helped me to understand and take a stand against my "one size fits all" GP who refused to increase the frequency of my injections because of the return of some of my symptoms in the run up to the next jab.

    You are still very early on in your treatment and God Willing you will soon see a great improvement in your health and well being.

    Do you know what your Folate level is as this is essential to process the B12 you are having injected?

    Believe me, there is life after P.A. and I'm still "clivealive" at 75

  • I know exactly where you are coming from when you say that no one understands that is exactly how it feels. The problem is that there is a complete lack of knowledge and understand within the medical profession regarding this illness when you are told " you are incredibly young to have this illness" it just goes to show the degree of ignorance and almost makes you feel you have done something wrong in acquiring it. Very young children and even babies have PA.... she apparently does not know this.

    But Clive is right you will get your head round this and get help from this forum and be able to have a good rant when you need it.

  • It's quite possible that the OH specialist has seen lots of PA/B12D people - its just they have not been correctly diagnosed :-(

    Stick with this forum and all the knowledge within - and they will have you well in no time . Come here for support too when things are tough ....

  • This is the one place where everyone does understand. Keep ranting (better than keeping it in) and asking questions. It has helped me.

  • For the first time since I was about 13 my body is fighting a cold bug! At last it seems I have an immune system!

    I have had symptoms for at least 30 years and it's only recently, after 18 months of daily jabs, that I am feeling better. If you get enough of the right treatment - jabs and supporting supplements - you can feel well and live OK. It's hard coming to terms with anything new, especially if you know you are going to have to manage your life a bit differently from now on, and there is a bit of grieving to do for the old fit, healthy body and life you did have. Don't be hard on yourself - it will all get better in time.

    There are lots of children with PA and their parents struggle to get enough treatment for them and there are other youngsters too.

    If you want more information, including sources of supplies, you could look up my profile by double clicking on my name and see my post "My Experiences!".

    Welcome to our world - we're a kind, friendly bunch!

  • I found out I had it a few months ago. I'm 27 now. I can relate to what you're going through, my life has been a bit like a roller coaster since the symptoms began and I've had anxiety problems and even started getting panic attacks concerning health issues in general, so I had to get started on antidepressants. I think especially when you're young, you never expect something like this to happen. The symptoms can be kind of scary and they can affect a lot of things in a way that you can start thinking you have a lot of serious issues. I think the best thing is actually getting diagnosed, it's not so bad once you manage to get the right frequency of injections for you, the problem is figuring it out and convincing your doctors when you actually need it more frequently than they believe.

You may also like...