Assert yourself and take control

As any fellow sufferer will probably know, but just in case, it is really important to assert yourself and take control of the situation. It is not necessarily the fault of the GP, physiotherapist, orthopeadic spine consultant or rhuemotologist etc that they do not know what is best to do. As we know, this is a pretty rare problem and there is lots of things going on that make a definitive answer hard to find.

However, once you have had a GP struggle to point to your coccyx, a rhuemotologist tell you it is normal, physios shrug their shoulders, an orthopeadic consultant tell you he does not want to get poo on his finger, it becomes increasingly clear that you have have to take some ownership and control of your situation. If someone cannot help you then be ruthless and move on. It is tiring but not as energy sapping as having someone clearly out of their depth take guesses. Easy to say with hindsight of course!

Through doing this, I found some great people who have not necessarily been able to cure it, but they certainly helped manage it and in doing so increased my understanding along the way. The great thing about having a rare problem is it sparks the interest of many health professionals. For example, I have had some great physio - the lady who did the dry needling and internal massage, a specialist physio who specialises in people who others cannot help (who has helped massively), and a mate who has been invaluable. However, in finding them I have also encountered at least half a dozen shoulder shruggers - ignore them and move on! I have had the same situation with chiropractors and orthopeadic surgeons - eventually you find someone who can help you, even if they cannot 'fix' you.

There is definitely a fine line between taking control such as this and bordering on being slightly obsessive about it! I think it can be done though - and to be honest, what is the alternative?! I feel like I have definitely taken the assertive proactive approach, but it has felt all consuming at times and almost to the point where it partly defines you. I have found exercising, working and socialising have helped keep me on the level though. Mindfulness has also helped me accept things and keep perspective on it all - rather than treat it like the evil enemy that I have to battle with. Through taking control you are winning the 'battle' even if there is no end in sight at that point in time.