Following a few blogs on here by newbies to the world of RA - and also because a friend's young son is struggling with probable AS and is putting up many manly faces of bravado she tells me - I've been thinking about the nature of courage.
My mum always had a big thing about being courageous, and when I lost each of my parents, both suddenly and both at the age of 73 - I had to recite her notions out loud to myself like a sort of mantra so I could keep going for me and for my two younger sisters and all the grandkids and devoted friends etc. I had to hold big funerals for both (my mum was stuck in Ecuador when my dad drowned while on holiday with her) and had to organise them so that my sisters could understand everything (interpreters) and it was quite a rigmarole doing all this and clearing her house a thousand miles away from my home and family.
So coming to terms with having RA has been hard because I've had to do it without my mum in the background telling me to be brave and pushing me to confront doctors simultaneously. And like many on here I've been tempted to just underplay it all in the hope that I won't have to suffer the humiliation of not being believed or thought a hypochondriac by my doctors - and also in the hope that if I don't acknowledge it then it will just go away. Basically there have been times when I've been a real wimp on this journey! The thing that's emboldened me most has been having this site and also having great role models in two fearless campaigners for parents.
And I've been lucky to have a good GP who believed this was RA from the outset and who referred me straight away, lucky to have suspicious blood results that showed something was up, lucky to have a great husband and kids and supportive friends. I don't take any of these for granted now. I know some on here don't have these to give them a head start and I'm very sympathetic to others so much worse off than me in all these areas and those who have more aggressive RA than I do.
The point at which we recognise that this isn't going to go away varies tremendously of course and depends on how severe the disease is for us and how high our pain thresholds are and how we deal with coming to terms with something like RA. This is especially tough when so many people don't know what it is or what having it entails and when the drugs we have to take are potentially so toxic and have horrible side-effects and when many of us get so little contact with our specialist rheumatology team.
But I did just want to say this for people who are even newer to RA than I am - and especially for those who are still in limbo awaiting diagnosis; there really is no place for false courage with this disease. By this I mean putting on a brave face, pretending all is well when it patently isn't and playing it down to friends, family and worst of all to doctors. There just isn't time to mess about with RA - and the doctors haven't the time, energy or inclination to read between the lines and decipher whether we are actually fine when we say we are.
So here's my advice from what I've learned to date; courage is telling people what is wrong if they ask (without boring them to death - it's a balancing act of course!) - and it is also being as frank as possible with the medical profession even if we risk being thought hypochondriacs or malingerers - which is horrible and does happen all the time. It's hard to do this for ourselves, so much easier to stick up for loved ones etc. But if, like me, you no longer have parents to push you and cajole you then you just have to be a parent to yourself and spit it out as it is for the doctors and nurses to make sense of as best they can. And if you're not getting the treatment you need and deserve then take courage and fight for it with all your might - it's your life, your body and you don't want to end up in unnecessary pain and deformities just because you thought it would all just happen as a matter of course. These are straightened times and we have to fight our corner hard and sometimes even fight dirty because there are so many other equally valid and much more visible claimants all around us.