A few weeks ago I wrote a distressed blog.
It was short, simply because I was too emotional and raw at that point. I'm still angry and will pursue it in a way that may be constructive. So in the spirit of being honest about my life and the struggle that living with fibro really is, let's get on with the blog.
One of the most disabling things about fibro, besides the physical, is others' attitudes and navigating the system. It's easy to get caught up in chasing down every nugget of hope for a magic bean cure but the reality is that there isn't a magic bean. I know that. I'm a realist, but what I should be able to expect as a minimum is the right pain relief or at least a sensible approach to finding if it's possible to find it for me. No one size fits all.
It would be nice to be treated with dignity and understanding, to be able to access the appropriate support in a holistic way - pain relief, counselling support, physio, etc. I have talked about this before and will come back to it again.
I digress - my experience recently failed miserably to meet a basic standard. I saw a Rheumatologist. I went alone thinking I was assertive enough to handle it - the doctor was dismissive and to cut a long story short, he told me to make new friends, tell them I had fibro but not moan about it because they can't help and that people dont like moaners. He told me there was nothing he could do, so go away, work with my GP and accept Fibro was a hindrance to life not a destroyer. I did challenge that and said from my perspective it was a destroyer. Sadly this fell on deaf ears. I'm angry all over again, to be dismissed in such a way is outrageous. I am aware that many doctors don't believe in Fibro but sadly my experience, more and more, is that finding a fibro aware health professional is like winning the lottery. 14 million - 1
I was so upset, I didn't want to speak to another doctor. I am more and more convinced that what we say as people living with fibro and what is heard are two very different things, so how do we ensure we get decent support? It is down to education, I'm well aware of the fibro charities and organisations trying to educate its something i feel passionately about. Education both for health care professionals and the people trying to navigate the system.
Its assumed you understand the system, Ive written before its a game really, it shouldn't be but it is, navigating not only the health system but then adding in the welfare one too can drive people to the edge, make them give up and suffer in silence because the fight just isn't in them anymore. it take a strong person to push, im strong but where fibro is concerned in many ways im as vulnerable as anyone - i leave doctors thinking its all in my head, defeated, upset and wondering how the hell i get heard and not seen as someonechasing rainbows looking for the magic bean of a cure.
I do know that i need to educate myself more and while the way the message was delivered upset me the tenant is true - there is no cure, and learning to accept, getting educated and doing all I can to manage fibro does at least mean i can be more incontrol over the elements i can do something about.We all have choices. I didnt choose to have this, but i can choose how i live with it. I want to work with others to come up with a pack for people on navigating the system, its almost impossible to see CAB etc now becuase of the cuts, so the thing i can do and hopefully others is to get educated and even if its signing a petition make sure anyone you can hears about the fear and lack of support from the instutuins we rely on to enable us.
The one thing i funadamentally disagree with the doctor about is support groups, what he may see as moaning i see as expressing and vocalising the emotional distress people feel when they have the life they knew ripped away. It takes time to rebuild a new life with fibro - the system makes that job 10 times more difficult A support group whether online or off is a place people can share and get support they desperately need.
I have talked a lot in a loose sense without putting forward how i would like things to be - so my next blog will look at how not just why. If you dont know where to go for help, what that help might look like and how to access support then this blog is simply another moaning woman who needs to get a grip.
The one thing i ask today is sign this http://epetitions.direct.gov.uk/petitions/20968 a petition to try and make the govenment stop and look again at the impact these terrible cuts are doing. 100,000 seems a big ask but it takes 1 click
thank you from the moaning fibro woman
Can you tell which part of this is edited by the - not too strict and letting Fibro Girl get away with some personal quirks - Grammar Police?