There are two types of chronic illnesses: those certified by trusted sources, those that you find mentioned in books, those doctors have heard of, and that people respect (OK, people rarely respect chronic illness of any kind) or at least accept.
Some chronic illnesses may even earn you financial assistance during difficult times, and a judge will take them into account if you bring someone who caused your illness to court.
Then there are the mystery illnesses, with unknown causes and even less known treatments, the clusters of unexplainable symptoms, the “syndromes,” whether chronic fatigue, adrenal fatigue, fibromyalgia, ME, mrs, idiopathic neuropathy, idiopathic eczema, idiopathic this and that.
When I see the phrase “Sudden Unexplained Death Syndrome” in medication leaflets, it always makes me laugh. Why do you need to call it a “syndrome”? Just admit that you don’t know.
When I was diagnosed with fibromyalgia and ME/CFS, the doctor gave me a little speech at the end of the visit, with a very sad countenance and grave tone: my life would be different from now on. I needed to accept my limitations and find joy in new kinds of experiences. There were treatments to help with the symptoms, but the crushing exhaustion, mind-numbing neurological symptoms and pain, impossible digestion, insomnia, and basically all of my systems shutting down, that was a life sentence.
I barely remember the speech. I remember my mind going blank and dissociating, and then when I was out the door – I couldn’t get out of there fast enough – I remember only one word screaming in my head as I drove away at full speed (pardon my French): “F**********k this!”
. On the long train ride home my entire body was shaking with anger. Good doctor – (she was indeed a good doctor, because she at least diagnosed me with something, whereas the other 10+ doctors I had seen before her just told me that I was hysterical or disturbed, or that I was having early menopause and symptoms of aging at the age of 30) – good doctor, how can you tell me that there is no cure when YOU DON’T EVEN KNOW WHAT THE PROBLEM IS? You don’t even know what is causing this?
Perhaps the source of all these symptoms is something that CAN be treated. You have no clue. Why the negativity? And then I thought that after all it was much better to be diagnosed with something for which doctors didn’t know the cause than with something like ALS, where more or less everyone knew how it would end. (actually at the time I didn’t know anything about holistic medicine, and that sometimes there is a bit of hope even when we THINK we know how it’s going to end).
That was the first time I realised in my life that doctors did not know everything. The more I read, the more I discovered that doctors knew very little. They were well-versed in the mechanics of the human body, but they didn’t really understand why things happened. They also arbitrarily divided the body into parts; for example, if you have a rash on your foot after taking a heart medication, the heart doctor will be unable to diagnose it; instead, you must go to the dermatologist, and vice versa.
I was getting ready to discover functional medicine, but I wasn’t there yet – what I discovered was a lovely website called “Alternative Medicine A to Z,” which I can’t find anymore (all of this happened a long time ago, in 2005), with a wonderfully long list of really weird therapies. Some of such therapies had been practiced for thousands of years, so I figured they couldn’t be that bad. Now it was up to me to decide which ones made sense to me, try them all, or at least those that were within my budget, and separate those that worked from those that didn’t. I was afraid of getting hurt or of poisoning myself, and I was afraid of unreliable, anecdotic sources.
At the time there were not Facebook groups to search, I had to dig in places like CureZone, and ancient online forum full of valid information hidden among a good amount of tin foil hat conversations. Also, new age experiences were not my thing, and the mere mention of “quantum energy” set me off eye-rolling .
One of the first items in the A to Z list was Acupuncture, and I lucked out because I met an amazing practitioner who broadened my horizons on different types of therapies, recommended books and reputable sources, and basically performed a miracle even if it didn’t last. Less than a year later I had to move to a different country and the herbal medicine he had given me could not be taken long term. But the point had been made: Chinese medicine was tackling the problem from a different angle, and I was no longer completely incurable. Maybe by trying even more different angles, maybe I could have gotten even more improvement.
If I had read the book Radical Remission, which described nine different areas on which one can work to improve one’s health, I would have saved myself a lot of time, but back then it hadn’t been published yet. As it was, I decided to focus on one issue/ organ at the time. I started reading about integrative medicine, holistic medicine, and functional medicine, all these terms were very much of a blur, but a concept I read stuck with me ever since: all disease is caused by inflammation, provoked in turn either by endogenous causes, more often than not infection, or by external causes, such as environmental toxins.
The inflammation theory of disease is pretty ubiquitous in various non-conventional approaches to medicine, like for example orthomolecular medicine, and the notion has been recently reevaluated by conventional medicine, for example in the report by Harvard Medical school mentioned in this article
Anyway, this concept sparked a revolution in my mind: if this view was correct, I didn’t need to KNOW exactly what I had, but I could start by reducing inflammation levels. And maybe I’ll figure out what’s causing this along the way. I never believed in ME/CFS for a second, not because it doesn’t exist (as conventional doctors claim), but because I refused to accept a label that was so harmful, when the same symptoms could be explained in a variety of other ways.
While waiting to find out, I decided to act on what I could: lower inflammation as much as possible and reinforce the immune system ( swollen lymph glands and low grade fever for years indicated some kind of infection).
In my specific situation, these I the basics I decided to work on:
Sleep – Sleep is when cells regenerate the most. Many years of benzodiazepines and lifelong insomnia left me unable to sleep without taking drugs. I gave myself 3 months of full time effort to learn to sleep again, with all sorts of meditation LINK, gas chamber levels of aromatherapy LINK and a bag full of supplements. I made it in 2 months. After a very long period tapering down, as per Dr Ashton’s suggestions, I managed to be drugs free by the end of 2008. For a more detailed look on benzodiazepines, you can read this post LINK.
Digestion – First of all I had to fix my terrifying bowel issues, that doctors had diagnosed as IBS, another “incurable” condition. I managed to overcome that with: various juice fasts LINK, hydrocolontherapy LINK, and after the fast I switched to macrobiotic diet LINK which included lots of fermented foods LINK to nourish the good bacteria in the gut, and excluded sugar gluten, dairy and processed food.
Spine health – Mobility of the spine is a predictor of longevity in many philosophies, including macrobiotics LINK and Chinese medicine. I believed this deeply because I had suffered from scoliosis and various pains for most of my life (pain that was thankfully mostly caused by bad posture, even though scoliosis and early arthritis were present), and even just being mindful of my posture took away a portion of my “pain bundle.” Seeing an osteopath and a chiropractor, as well as reading about the Alexander technique LINK and Feldenkrais LINK, helped very much. When I was still very weak, I joined tai chi lessons (during the first lessons i had to lie down and rest several times). Years later, a yoga routine substituted the physiotherapy. Another secret weapon against arthritis, pretty popular in Europe, is thermal baths (elsewhere called hot springs I think). Thermal baths offer various kinds of healing waters, and some of those are especially effective for bone issues. I found my thermal heaven in Budapest LINK, but you can search for yours here in this list LINK.
Immune system – At the time I knew nothing about immune modulators LINK, so I did all I could with just some simple supplements or, actually, superfoods: bee pollen and royal jelly are supposed to help with allergies, garlic supplements, and generous doses of Vitamin D , K2, zinc and Vitamin C. At the time I was taking a supplement with papaya extract LINK but that was pretty random, also the supplement was quite expensive, and compared to its effect not much value for money. Macrobiotics insisted on Shiitake and Reishi mushrooms, which reduce inflammation and boost the immune system, and I bet that in the long run they helped.
Breath – Breathing is considered as life in various philosophies and they are not wrong – learning about Pranayama LINK and practicing various kinds of breathing meditation helped me bring a lot more oxygen to my cells.
Grounding – Grounding or Earthing LINK means realigning the body’s energy with the energy coming from the Earth. That sounded a bit too esoteric for me, but my rational mind could understand that getting negative ions from plants, sea and nature in general was a good thing. In the end the decision of doing it regularly was not “rational”, I just felt much better when I was spending time in nature, and symptoms reduced . I followed the signs and I moved to the countryside (and unknown to me at the time, I moved away from a ton of EMFs).
Peace of mind – On top of all the physical suffering, I was also tormented by a variety of painful thoughts – about all the losses I had gone through, the trauma from my medical encounters, ancient hangups about my family and so on. The bad experiences were in the past, but they were reenacted by my thoughts, every day. It was clear that all that emotional pain had to go. I went hard core with various meditation courses, mostly Vipassana but other kinds too, n and I used the time when I was completely unable to move as an opportunity to meditate.
Toxic relationships – Many of my relationships dissolved like smoke when I became ill, I can imagine those were not great relationships to start with. Having a supportive and positive environment is really important for healing, and if that is not possible, a serene solitude is preferable to toxic relationships. I had to learn how to set boundaries and change my views completely. ACA and a ton of self help books LIST helped.
End of the list!
As you can see, there was no quick and easy fix. In hindsight, all of the above helped, but of course it wasn’t enough.
In my particular case, I didn’t actually go into remission until I learned about amalgam poisoning and removed all the amalgams. Until I learned about reactivated Epstein Barr and Lyme and I addressed them, some symptoms lingered on. When I didn’t know about the mold, just reducing inflammation was definitely not enough, I needed to move out and remove the triggers to CIRS, treat the infection and take binders to remove mycotoxins.
This said, blindly reducing inflammation like I did CAN work, I guess, if the situation is not too serious.
All these words to say that, when you don’t know what your problem is, there are still some steps that you can take just to start on the right foot and give your body a chance to heal, while you are waiting for the correct diagnosis. If you are lucky, those steps will be enough. If not, it’s still something that needed to be done anyway. And I hope that you will keep looking for answers even when conventional medicine cannot provide an explanation or a solution.
Thankfully, things have changed completely since almost 20 years ago, when my troubles happened.
Functional medicine is more well known. In the US the figures of LLMD (lyme doctor), Mold MD and Naturopath have become more familiar, and several potential causes of disease – chronic infections, heavy metals, gut dysbiosis, environmental causes, subtle hormonal or mineral imbalances to name a few – are becoming increasingly accepted, even, rarely, by allopathic doctors.
What makes me sad is that these “new” or “alternative” causes of disease are neither new nor alternative. Both the diagnosis of these illnesses and the treatments are fact-based, science-based, tangibly provable and reviewable. For example, the work of Orthomolecular doctors in the 1950ies-70ies was science based and valid, and some of their discoveries are confirmed by cutting edge research today LINK. And yet most of these theories are dismissed by conventional medicine.
This is why I love functional / integrative / holistic medicine:
it’s not, as conventional doctors believe, a ring of unscrupulous scammers preying on the vulnerable and providing false hope in exchange of money (OK, there might be a few of those out there, be careful!) . On the contrary, integrative medicine builds on the same corpus as conventional medicine, but it provides solutions to root problems , and, more importantly, an explanation where conventional medicine only sees “unexplainable symptoms”.
To conclude, it makes no sense to accept a diagnosis of INCURABLE from someone who doesn’t even know what’s causing the problem. It is far more helpful to think of one’s illness as UNKNOWN, rather than incurable, and to keep trying to solve the mystery, outside of conventional medicine, which, while often valuable, is NOT the only truth, especially in the case of chronic illness.
