Taking ownership of my own health

I am delighted to present to you all a guest post from fellow scientist, Lyme patient, and dear friend Niamh. In this post she discusses the challenges, as a scientist, of moving away from allopathic medicine in her quest for health and healing.

Niamh is a passionate researcher, writer and soul searcher. She seeks to impart greater understanding of chronic illness and to defy the social stigma which surrounds it.

You can find out more at her website: lymesoul. Enjoy!

A Change in Perspective

​As a scientist, I have always been highly sceptical of any kind of alternative or “holistic” treatment. As a chemist, I have huge faith in the efficacy of pharmaceuticals and, before reaching a life-altering juncture in my illness, my life plan was to design therapeutic drugs. I had been lucky for most of my life to reside on one side of the fence: a far-removed world of Molecule Construction, seeking out new and fabulous structures which could modulate a specific biological response. My mind was occupied with the purely academic side of “making a difference” and gaining recognition in something which might just wipe out some uncontroversial, life-altering disease.  The notion of illness was just that: a notion. A concept which I could conceive of on a purely intellectual basis. I had never felt first-hand the dramatic effects of a life-threatening disease; more specifically, I had never even considered the effects of grappling with an illness for which there was no known cure, little recognition from the established medical community, and consequently little respect for the suffering patient. When Lyme disease shattered my life, or so I believed, I saw only darkness: I was reminded each day of everything I had lost, from my mobility to my own cognitive function and ability to process information. Lyme chose rather indiscriminately and did not care one iota that I was a scientist or that I had a solid life plan. And just like that, I was standing on the other side of the fence, no longer capable of operating in the world of Molecule Construction, feeling utterly abandoned by our allopathic medical community. Just like that, I experienced for the first time in my life, the devastation that disease wreaks; I was the patient for whom I had once aspired to design a life-saving treatment. But now and for the rest of my life, this will no longer be a concept, but rather an earth-shattering reality. It takes time to readjust and to reorient oneself when one has completely lost one’s balance; but I no longer view my disease solely within the context of lack. In fact, there is one truth which I know in the very fibres of my being, a reality which I will own forever:

I will never stop being a scientist.

This disease may slow my path or set obstacles along the way. It may not present a smooth thoroughfare, but my progress will not be impeded. And now, thanks to Lyme, I have experience of both sides of the fence. Now, I feel blessed to know first-hand what it is like to reside in the world of Molecule Construction and in the world of the disabled patient. The difference between then and now is that today I am imbued with an even stronger desire to relieve the pain of those who suffer, often without hope, without a cure for their disease, and without medical recognition. This is not something which Lyme disease robbed from me. This is a gift.

Alternative Approaches to Lyme Disease Treatment 

This new chapter of my life has been somewhat transformative through the empowerment associated with claiming ownership of my own body and its intrinsic capacity to heal. Over the course of ten months, I tried everything within my reach to combat this disease, ultimately discovering the power of a more holistic, naturopathic approach to treatment.

My initial decision was to undertake a treatment protocol which relied heavily upon pharmaceuticals, primarily antibiotics, prescribed by one of the most well-established Lyme specialists in the United States. During this three month period, I deteriorated significantly to the point where I was bed-bound and unable to perform daily tasks. Following a brief period of hospitalisation, during which the complete lack of knowledge surrounding my disease became excruciatingly apparent, I made the radical decision to terminate all pharmaceutical treatments and to seek alternative methods for restoring my health. At this point, the lowest point in my illness, I spent my days researching chronic Lyme disease and any treatments which might potentially provide relief. My research brought me to the Hero and Heroine of my story thus far: Stephen Harrod Buhner, an herbalist specialising in Lyme disease treatment, and Dr Terry Wahls, a physician who reversed her diagnosis of secondary progressive multiple sclerosis through the development of her own targeted nutritional programme  (The Wahls Protocol).

An excellent account by Dr Terry Wahls on how she achieved recovery and the resetting of damaged mitochondria through diet: Minding Your Mitochrondria

Another three months passed by, during which I devoted myself to the self-administration of a tailored Buhner-inspired herbal protocol, in combination with a radical Wahls-inspired nutritional programme designed to reverse immune dysfunction.

During this time, I have observed dramatic improvements in both my physical and mental capacities, I have transitioned from being virtually bed-bound and severely underweight to gaining sufficient strength and stamina to leave the house quite regularly. I have a long journey to full restoration, but I owe these improvements to embracing a new healing paradigm, an approach which might once have confounded me as a scientist. In the absence of knowledge and support of my disease from the allopathic medical community, I have taken ownership of my own body, my own healthcare, and my own intuitive capacity. If there is one thing this journey has taught me so far, it is this:

You know your body better than anyone on the outside.

If you self-educate and become an expert in listening to and hearing your own body’s cues, I am beginning to discover that you can heal physiological damage on a cellular level. For example, I am intrigued by the concept of restoring diminished mitochondrial efficiency using food as medicine, and am enjoying the benefits of increased energy through strict adherence to a ketogenic diet. As scientists, I believe strongly that we must remain open-minded, being willing to make an informed judgement based on empirical results as opposed to being trapped by certain preconceived logic.

​I hope to share more of my experiences relating to herbal medicines and the Wahls-inspired ketogenic diet, but in the meantime, I feel privileged and inspired when others share with me their experiences of becoming executives in the provision of their own healthcare.  Don’t hesitate to contact me…

 

The mind/body dichotomy

I have a long-standing interest in the relationship between the mind and the body. A lot of my life history has drawn me towards it: my psychology degree taught me all about the theory of the mind, chronic illness has taught me how the mind can negatively affect the body (I often experience flares when I am stressed or sleep-deprived, for example), and my yoga practice has shown me the amazing things we can achieve when the mind and body work together in harmony.

But the thing is, the very concept of mind/body bothers me, and the more I think about it, the more confused I get. Where does the mind stop and the body begin? How can we possibly separate them out into two entities that can be described and studied without consideration to the other? Is there even any value in having these two distinct words; what do we gain by treating them separately?

I have recently been studying some of the medical literature about the relationship between physical symptoms and mental ill health, and what stands out for me is that even the experts on this topic, in the Western world at least, treat them as two separate ‘things’. Take for example, this study on the use of psychological interventions for people with emotional disorders and chronic illness. The very first line of the paper says: “Emotional disorder associated with physical illness falls into two main groups: psychological reaction to physical illness and somatic presentation of psychological disorder.” So either a) you have a physical illness and it makes you depressed/anxious etc, OR b) you have a mental illness that just happens to express itself as physical symptoms like tummy aches. But how valid is this distinction, and how useful is it to think about these relationships in such a linear fashion (i.e. A causes B)?

Could we not say, instead, that health is just health, and we all fall on a health continuum ranging from very poor to very good? Anyone who’s ever had depression will know that it can make you feel absolutely terrible physically – you might feel exhausted even though you get 10 hours of sleep every night, you might have constant headaches or migraines, or you might be picking up every bug going around. And anyone who’s ever had a chronic illness will most likely have felt pretty shit mentally at times, because feeling lousy for extended periods of time really does start to drag you down after a while, no matter how good your coping mechanisms. In fact, even an acute illness like the flu can really mess with your head, because as much as the idea of lying in bed all day sounds delightful when you don’t get to do it very often, once you’re forced into it you quickly start to feel like you’re in prison.

I’ve had times in my life where mental illness was my primary health concern and my only diagnosis, and I’ve had other times where my physical health was in a very poor state but my mental health was, all things considered, pretty good. But how much did those diagnoses of ‘mental health problem’ and ‘physical health problem’ really help me? In fact, I think these categories can actually be quite damaging, both for the individual and for our progress in understanding disease. Because the very presence of this mind/body dichotomy means that when a doctor suggests a psychological treatment, it immediately sends a message to the patient that this problem is all in their head. And I know both from personal experience and from the experiences of others with chronic illness, that this can make you feel disbelieved; that you have to somehow defend the physical nature of your illness.

But this attitude means that people who could be benefitting from psychological support are not getting it, because to accept psychological help means you are admitting defeat – if this is in my head, then it cannot be physical. Likewise, I think that having a diagnosis of a mental illness can make medical professionals very quick to discount anything other than that mental illness as a cause of problematic symptoms, adding to the cycle of feeling disbelieved and unsupported.

I dream of a world where this mind/body distinction is a thing of the past. Where we all recognise that the mind and body are intertwined, so much so that we talk about them as one entity without even realising that’s what we’re doing. Where there is no shame in accepting that the way feel in our heads might be affecting the way we feel physically, or vice versa. Scientists don’t know it all, and just because something is widely accepted by very clever people, it doesn’t mean that it is the most helpful way to think about things, or even that it is true. Didn’t the brightest minds in the world once believe that the earth was flat?