Frustrated

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Emilola
Emilola Member Posts: 7
edited 19. Aug 2019, 09:35 in Living with arthritis
Hi all, sorry but got to vent a little. Haven't checked in in a while - a lot has been happening with treatment and getting a new job!
Just feeling a bit frustrated as I feel like I haven't really had a proper talk from the docs or nurses about my condition (SAPHO syndrome and spondyloarthritis). Things keep moving forward in terms of treatment but I feel like I'm sort of blindly stumbling through the dark. Am I expecting too much for someone to sit down and say "Hey this is what we think you've got and this is what it means for your life"? I think its kind of a big deal to suddenly find out you've got a chronic illness when just over a year ago you thought you were perfectly healthy. And then no one explain anything about it to you...
Anyway, I left a much more polite version of this message on the nurse advice line so hoping someone will take pity on me. Haven't had the best experience with healthcare professionals so far...(speaking as a healthcare professional!)
Sorry, rant over

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  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    I can understand your frustration but, having Googled Sapho Syndrome, which I'd never heard of, I'm wondering how much your docs could explain.. It seems to be a rare disease. I did find this site which is quite informative, especially the section on organisations . https://rarediseases.info.nih.gov/diseases/7606/sapho-syndrome . I hope it's of some help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Doctors specialise in the theories of disease and move seamlessly from the A to B of being ill (A being the disease and B the meds used to treat it) whereas we have to live with the A to Z of it all. I remember my healthy consultant telling me that humira was going to change my life because I would no longer need my crutches or pain relief. She was nearly right, I now need a rollator, a wheelchair and stronger pain relief. :lol: I haven't googled Sapho Syndrome but the rarer the condition the less medicos are going to know about it - they may well need to learn from you to broaden their knowledge and second-hand experience of it and of course the way you deal with it will be unique to you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Emilola
    Emilola Member Posts: 7
    edited 30. Nov -1, 00:00
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    Thanks guys for the replies. Yeah I realise it's a bit of an unknown entity. Just needed to get all this out of my head and into the world! I have to say I think I'm incredibly blessed that the docs have been very keen on getting treatment started and taking my symptoms seriously which I'm sure is not the case for everyone.
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    In a strange way, you could benefit from having a rare disease. Good docs love 'em. They find them interesting so you are more likely to get their fu ll attention than a patient with bogstandard RA etc. I hope that's how it pans out for you and that the increased interest will help you to find a way of living with it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
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