Dear Rhapsody (& Molleyemma and Apollogirl),
I'm not a medical expert - I'm at the other end of the spectrum suffering a chronic health condition similar to your own. I formerly worked as a chemist, an adult educator and I'm a trained counsellor. I am now a carer and volunteer in the disability sector but like yourself am trying to rebuild my health and re-enter ‘a’ world of choice in life rather than being ‘done to’ and told and diagnosed and judged. Your story is not unique or odd Rhapsody - it's an echo of thousands. I completely relate to what you're saying and I write here to VALIDATE what you're going through as a typical and normal reaction to an extremely challenging and life changing experience. I write this for you and myself and anyone else reading who might benefit. It may challenge medical experts who might read it from a qualified professional perspective however I ask that they would consider questioning their own capacity for empathy and ‘entering the world of the patient’ rather than judging.
I've been told I have chronic whiplash along with many other diagnoses dependent upon the current presentation of (often cyclic) symptoms and the training and experience (both type and degree) of the practitioner I'm visiting at that particular time. Often, in the absence of hard clinical evidence which is rather easily interpreted, what people like us get is a best fit diagnosis - which for us, often in intolerable pain and suffering, is little better than an educated guess. Often my long winded list of symptoms have been judged and interpreted as a good old fashioned whinge rather than “these are my symptoms, do you know what's wrong and can you fix it?”. After years of this and a loss of trust and faith in medical “expertise”, (not to mention tens of thousands of dollars) one gives up as they ‘feel’ discarded into the hypochondria heap and basically told to “get over it”. Fortunately there are many good medical practitioners around particularly those who understand integrated medicine and holistic health (strengthen what can be strengthened and minimise all bodily and psychological stressors for optimal outcome whilst pursuing curative treatments).
Being told to change your attitude Rhapsody, I find offensive. You don't have to look far in the medical literature to find everything from nasal hair to menstruation being blamed on hysteria. Having a chronic health condition is not something one can ‘move on’ from, ‘get over’ or ‘deal with’ any more than one may move on from, get over or deal with depression or a broken leg. Your ‘attitude’ was probably no different to ‘the experts’ attitudes before your injury and what you need is ‘supportive’ friends and practitioners (usually the more supportive doctors are those who have a family member or friend who has suffered a similar condition). Your healthy friends will eventually judge you (given time) and become impatient, think you're malingering as many medical experts will. The best place to find the right kind of validating support is with a community (either local or net) of people who also have your medical condition. It is also from their experience at eventually finding treatments that work and practitioners that use them rather than random medical experts that will help most. Doctors would do well to obtain and pass on such resources as relevant support groups in their locales. You could ask your neurologist, do a web search for your area, contact your local Community Health Centre, ADHC office (Nurse), a local Counsellor, Regional Social Research and Development organisations.
Also www.elevate.com.au//Health-Services/Cold -Laser-Therapy may help if you have an unresolved soft tissue injury. I'm saving as it's expensive and I don't live in Sydney but you pay as you go and it's Medicare rebateable (I believe it's available in Adelaide also). It's a cold laser treatment developed by NASA and delivered by qualified medical doctors and has zero side effects.You can enquire and have an initial phone consult with a doctor there.
Practical measures and treatments that work are ultimately what's going to be effective rather than well-meant advice which you've probably been given by every person you know and every stranger you've met as well as well-meaning doctors. What you don't need is what you also usually get plenty of - judgement from those same people with all the answers and zero experience of what you are going through. Think about asking them “How many people have you cured from this condition?”. Even worse, you lose your income, your privacy, your independence and social participation. You are constantly forced to repeat your list of symptoms in the hope that maybe one person knows what's wrong, that one person can help. Instead you're told you're the problem. Your attitude is the problem or a big part of it. You are blamed for your condition.
Don't accept it! I challenge any super-human to keep their chin up, smile, be happy and cheerful when they have flu-like inflammation, a knife in their back, a fire under their neck, migraine and little more to look forward to besides much more of the same as well as invalidation.
Another truth is, your diagnosis is as good as your ‘observable’ physical signs and symptoms, your communication abilities, the communication ability of your doctors, the diagnostic capabilities of the clinical tests additionally employed and the ability of your doctor to integrate and interpret these based on his/her individual training, knowledge and experience. From the human perspective, being ill brings with it vulnerability - we become reliant upon ‘experts’ to solve our medical dilemma. Very few of these experts have suffered from the conditions they treat. They are thus text book rather than experiential experts, some with much experience, some with strong opinions, some with prejudices relying more upon belief systems than good science.
Chris Uhlmann (Sky news presenter) also found judgementalism - and the additional superior or condescending attitudes people believe they have a right to impose upon you when you are no longer in ‘their league’ (healthy and successful - highly valued social attributes as opposed to illness and disability which are generally unconsciously devalued in our society) - a difficult factor to deal with when he was struck down with a chronic fatigue illness following a hepatic insult. He's written a book about it but look around for similar books also, they're helpful for validating your illness ‘experience’ whereas society, in general, is unable to. Finally, you'll know who your friends really are when you are well again. I am much improved and continuing to do so with the help of some excellent local practitioners. Good luck and good on you for continuing in your struggle to find answers. You've genuinely erned my respect. I hope to hear that you have fared well and regained your health.