“First, Do No Harm…”

A couple of weeks ago I wrote this post, detailing the trouble I was having with the only mode of treatment I was being offered (there will be a post next week about re-discovering a privately funded treatment that had been right under my nose, and why I was right to be suspicious of the program); the psychologist that I was dealing with kept trying to draw me back into the schedule that I had explicitly told him I wanted to be extricated from.  As I had explained the link between Ice Hockey and an alleviation of my symptoms at an earlier meeting, he kept trying to use ‘sports based language’ as a psychological ‘trick’ to get me to relax into his way of thinking.  What he didn’t know, however, is that my sister is a psychology major, so I’ve learned a lot about human behaviour and manipulation over the years. A non-sports fan, and more importantly, a non-Hockey fan trying to ‘match and mirror’ what he thought my language would be just made me even angrier – it was a blatant attempt at control, and further proof that I could not place my trust in him. This is the email I replied with.

Dear Dr. __________

You were worried that this would become a debate; I was worried that you would try and treat me for a mood disorder that I don’t have.  It would seem that we were both correct.

“…I will, according to my ability and judgment, prescribe a regimen for the health of the sick; but I will utterly reject harm and mischief” The Hippocratic Oath

I know that CBT is the government’s current ‘golden child’ which means that, as a treatment, it’s very hard to escape from once someone is in the system: but that doesn’t mean that it is the most effective treatment for all of the illnesses that it gets thrown at.  Every study regarding Fibromyalgia and CBT states that it is used to help patients cope with the Depression and/or Anxiety that come from having said condition.  That would suggest that while you claim to believe that my fatigue has a physical element, the overarching belief is that it must be related to something psychological.  This is a fair enough belief as you are a psychologist, and I’m not so naive to think that stress plays no part in how the human body creates or responds to illness; but, the only thing raising my stress levels right now is you.

I know that the drop-out rate will affect the final outcome of the study, and whether or not the results will be published, but the drop-out rate for CBT is very high anyway, so perhaps that should have been considered before applying the rigid techniques to symptoms caused by the patient’s physicality.  Altering the perception of a particular symptom will only lessen its effects if the symptom is created by the patient’s psyche, but no amount of ‘clear and correct’ thinking can eliminate a diabetic’s need for insulin. Assuming that the fatigue is a cognitive issue is akin to using the phrase “the only disability is a bad attitude”. As I’ve tried to tell you before, ‘distorted thinking’ is not what’s causing my primary Fibromyalgia symptom.  Plus the deliberate avoidance of even acknowledging that Fibromyalgia is a secondary, co-morbid condition to Endometriosis  (the overworking of the immune system does cause fatigue, which is why so many women with Endometriosis have a secondary diagnosis of CFS) suggests that the agenda is more important than the clinical context of the illness. ‘Correct thinking’ is not going to stop the internal haemorrhaging, and ignoring the internal haemorrhaging is not going to help the Fibromyalgia.

Pretty much everybody who suffers from wildly varying energy levels will have to learn the delicate art of ‘pacing’, rather than berating themselves for not being able to get more done.   To use an analogy from modern times: you can only recharge an iPhone by plugging it into an energy source. Sometimes that source will be an iMac, ensuring that your system is fully up to date and all your media purchases are now mobile.  Sometimes it will be a wall socket, meaning that all standard operations will be resumed.  But occasionally, and often enough to be considered problematic, all you will have at hand is a disposable, battery based ‘festival’ charger, giving you only enough energy to use the phone in an emergency.  The trouble is, those of us with fluctuating illnesses will have no idea what energy source we were plugged into until we start using the phone.

The Fibromyalgia diagnosis allowed me to take a long look at my life and evaluate what was truly important for me

This is why I have such a huge problem with the almost pathological focus on goal setting.  No acknowledgment of past or current achievements is ever made because it doesn’t fit within the parameters of the treatment.  So the two days of bed rest I needed after having a very active week would have been seen as a failing to create ‘cognitive clarity’ around the symptoms, rather than an insurance against further illness (viruses love me when I’m exhausted…)  You say that the treatment is designed to ‘get me doing more of what I want to do’ but completely ignore the fact that I am already (almost to the point of sheer selfishness) doing A LOT of what I want to do – if it doesn’t fit into what society considers being ‘normal’ or ‘productive’ then it’s less to do with the rebels on the fringes and more about the group consensus, regardless of whether that consensus is right or wrong.  As a voluntary worker, I help to create interactive stories for children with severe learning disabilities, but because I’m not earning money from it, it’s considered unimportant; and despite the fact that it’s more physically demanding and highly skilled than any paid job I’ve ever had before, it’s still not really considered to be ‘work’.

The Fibromyalgia diagnosis allowed me to take a long look at my life and evaluate what was truly important for me: not being able to do everything (who can actually do that, anyway?) was a hell of a lot less important than being able to the things that I actually enjoy.  Am I concerned that I no longer fit society’s norms? Of course not! Roller Derby taught me how to be bold: I’m not painting myself back into the shadows for anyone.  As such, I will try anything that could alleviate my symptoms, but will only stick with the ones that do no harm.

What this all boils down to is that I don’t believe this mode of therapy can work for somebody who is not suffering from Depression or Anxiety (although the therapy itself can be anxiety inducing, for non-sufferers, due to its rigidity).  The fact that you keep insisting that I stay in the program suggests that you do believe I’m suffering from a mood disorder, and the fatigue is part of said disorder. If this is the case it’s fine, but you needed to let me know that at the very beginning instead of trying to convince me that I was being treated for the neurological disorder that I have, and not the psychological disorder that I don’t.