'Coming Out' of the (Multiple Chronic Illness) Closet : My 'Ensemble Cast' of Conditions

(it's a VERY similar closet & settle down, I'm the daughter of 2 Queer mums).. ????♀?????

Closets are for clothes & personal items, not for chronic conditions.

I don't define myself solely by my illnesses (I'm SO much more than them) but they're a huge part of my life & greatly inform my work.

When someone has chronic conditions of any type, to truly know the person & their work we must get to know their conditions.

So, let's get to it!

*Pssst! There are more conditions than are discussed here, but in all honesty the fatigue from writing / editing became too much & it was important to go ahead & share! ??

I may edit more in later. O, & the personally-challenging nature of this article definitely requires my use of emoji ??

Introducing ~ (some of) my 'ensemble cast' of conditions.. ??♀?

?? Myalgic Encephalomyelitis (M.E.) ??

As the name suggests, this is a painful & chronic inflammation of the brain stem & spinal cord, as well as being linked to a cellular malfunction (for me, genetic, though not the case for everyone), & centralised hypersensitisation ~ all of which I'll be explaining more soon, as May is M.E. awareness month.

Because cells in the M.E. body chronically don't produce enough 'ATP', or energy supply, it takes many, many times more effort for me to do any task (including writing articles or explaining my conditions!), even ones that non-M.E. folks don't think about like standing up (yep) or making a tea, & each task often takes longer & requires more recovery time (from minutes to months) because my cells can't refill their energy levels adequately / efficiently, the way cells can do in people without this condition.

The primary symptom of M.E. is fatigue ~ yet, whenever a person with M.E. says they're 'tired', know this almost never means 'just tired' but a vast, often insurmountable fatigue that most people will never experience. This symptom is the reason M.E. is often interchangeably called Chronic Fatigue Syndrome.

However, the latter is a name I avoid because : 1) there are many syndromes with chronic fatigue as a central symptom, though the central issues of many of those other syndromes are unknown, whereas the central issues existent in M.E. are already significantly known by science to be cellular & often gene-based ; 2) there are so many other issues & symptoms in M.E. as equally-debilitating as fatigue, that to focus solely on one of them by naming the illness after it, diminishes the perception of how serious the other symptoms can be.

Myriad other symptoms exist (I'll go into this more in May), including the chronic & often debilitating pain & inflammation of the brain stem & spinal cord & surroundings, but also the same of the entire body & its organs & tissues, by virtue (by vice?) of neurological pathways from the brain & spine. Additionally, there are other side-effects which don't directly present as relating to energy levels, such as digestive problems or cognitive function.

Sadly, the facts about M.E. & what helps it & what doesn't are little known by the public, unfortunately largely due to bad science, agenda-laden propaganda, & medical gaslighting that, despite immense effort by patient advocates, patients themselves, nonprofits, & international scientific progress, continues to skew public perception of what M.E. is, what is already known about it, & what it's like to live with.

Though things like a special self-tailored diet, ability to control one's surroundings (particularly in terms of sensory input), & things like a combination of holistic remedies & preventative prescriptions can support what it's like to live with M.E., & even improve it greatly, there is currently no cure.

????? Postural Orthostatic Tachycardia Syndrome (POTS) ??????

Under the larger umbrella of Dysautonomia (dysfunction of the autonomic nervous system), POTS causes me to have consistently dangerously low blood pressure, often combined with tachycardia (rapid heart rate), & my blood vessels don't contract properly, which means the blood flow to my brain is often severely compromised because it pools in my lower extremities (ew!).

Many side effects exist, such as 'brain fog' ; syncope (fainting) & pre-syncope ; issues due to improper blood flow such as cold limbs or digestive problems ; or even physical sensations that quite accurately mimic anxiety. Regarding the last symptom, there are many people (particularly women), who, like me are initially misdiagnosed solely with anxiety, instead of as having, or in addition to having, POTS. It's crucial to know which is which (or if both exist), because the right medicine for one isn't necessarily helpful for / can even exacerbate the other.

Though things like a special self-tailored diet (increasing salt intake is known to be a huge help), ability to control one's surroundings in terms of sensory input, & things like a combination of holistic remedies & preventative prescriptions can support what it's like to live with POTS, & even improve it greatly, there is currently no cure.

? Hemiplegic Migraine ?

Migraine is a neuro-cardiac condition, not how the word is often used, meaning 'a bad headache'. Hemiplegic Migraine (HM) is a very rare type of migraine in which electricity passes abnormally through the cells / brain cells. My type of HM genetically runs in a family, & mimics stroke (eeek!).

It can be triggered by many different things, from sensory (neurological) overload, fatigue (this means there is a big problem when HM coincides with M.E.), changes in light, or even food intolerance.

Common symptoms include numbness / paresis / paralysis of one whole side or parts of one 1/2 of the body (the 'hemi' or 1/2 part of 'Hemiplegic') ; difficulty or inability speaking & if speaking slurring words almost as though drunk ; severe dizziness ; visual disturbances &/or aura (the latter is like still seeing the imprint of a light bulb after looking away) ; nausea & vomiting ; syncope or pre-syncope ; difficulty swallowing ; disorientation ; heart & blood-pressure erratic-ness (not fun with POTS!).

Episodes can last anywhere from minutes to days, & can exist with or without pain.

HM episodes can also resemble Epilepsy or Parkinson's in terms of involuntary movement, due to the significant overlaps in the illnesses regarding the relationship to the deep brain & the brain's occipital lobe (where the back of the head meets the neck).

Though things like a special self-tailored diet, ability to control one's surroundings in terms of sensory input, & things like a combination of holistic remedies & preventative prescriptions can support what it's like to live with HM, & even improve it greatly, there is currently no cure.

?? Coeliac Disease ??

Coeliac disease is like gluten intolerance, except this condition is specifically an autoimmune condition, meaning the body is prone to involuntarily 'attack itself' (ouf!) when it feels attacked by external substances (e.g. gluten).

Many symptoms exist, such as chronic digestive problems, & often persist even when a person eliminates all gluten : I've been free of gluten / dairy / yeast & other major irritants since 2011 & it's done wonders. Yet, my system remains precarious (gastrointestinal & other systems it affects, such as brain health, whereas the gut is known as the '2nd Brain') because one of the main issues in an autoimmune condition is consistent & centralised hypersensitisation, & the hypersensitivity that sensitisation causes, which is not always completely eliminated even if / when the substances are removed &/or over a long period of time.

Despite improvement, there is no cure.

?? Fibromyalgia (or Fibromyalgia Syndrome) ??

This is a neuromuscular chronic-pain syndrome & autoimmune condition (it isn't fun when the body attacks itself when it already feels attacked by external substances!) involving severe inflammation of the muscles, fascia, & connective tissues.

I'm in significantly less pain because of a long-practiced, self-tailored anti-inflammatory diet ; yet, because this condition comes from a structural & chemical malfunction in the centre of the brain (namely, the thalamus & hypothalamus), there is no cure, only remedies ~ & thank goodness for holistic medicines like homeopathy, flower remedies (you may have heard of Dr. Bach for his most famous Rescue Remedy formula), & plant tinctures (such as those studied & made popular by A. Vogel).

Whenever I don't have my holistic medicines, I know quickly & intimately the large degree to which my health is far better because of their presence.

Like with coeliac disease, diet is a big one with Fibromyalgia, because of the gut-brain connection via the vagus nerve. In terms of levels / frequency of allodynia (all-over pain), my switch in 2011 to an anti-inflammatory + low-acid + coeliac-friendly + non-yeast + non-'nightshades' (nightshades = potatoes, tomatoes, aubergine / eggplant, & all peppers including sweet / bell peppers & cayenne) has been an improvement more HUGE than I can express. The major thing with all of these conditions is to cool down the body from the inside ~ even if (often particularly if) it we feel cold, whereas when we get cold it can be because the body is working too hard to try & cool itself.

Though things like a special self-tailored diet, ability to control one's surroundings in terms of sensory input, & things like a combination of holistic remedies & preventative prescriptions can support what it's like to live with Fibromyalgia, & even improve it greatly, there is currently no cure. [? are you seeing a trend in my conditions? ??]

???? Kidney / Adrenal malfunction & weakness ????

This one is more obvious! Yet, the non-obvious part is that, as a part of the endocrine system (the adrenals are glands), this weakness can tip out of balance any / all of the other illnesses, namely because of its interaction with 2 collaborative body systems called the HPA (hypothalamus-pituitary-adrenal) axis & the OAT (ovary-adrenal-thyroid) axis.

One specific difficulty with the way this plays out is in relation to any headache condition, in my case migraine ~ it can actually trigger headaches & migraine in many people. So, to heal (not 'fix', heal or ameliorate!) headaches, taking a closer look at our kidney / adrenal health is crucial.

Again, with the holistic remedies. For nearly 10 years, the only medicines that have been consistently successful for me with my kidneys / adrenals have been holistic ones. This is largely because the wellness of these 2 organs is very subtle, particularly due to their communication with the 'Rest & Digest' / 'Fight or Flight' neurology. With 'Rest & Digest' / 'Fight or Flight', often the problems that arise is already due to inability to (re)balance themselves, meaning that most of the time to add harsh medicines attempting to balance them actually puts the whole situation out of balance even more.

To address the root of a subtle system, we need subtle remedies at the core of the remedy process.

?? Ehlers-Danlos Syndrome (EDS) ??

This is hypermobility condition about which I'm only recently learning more, a condition that makes joints, ligaments, & fascia 'floppy' ; &, though it is most well known for making it easier for joints to dislocate, there are also many other non-joint-related symptoms such as digestive problems, bruising easily, & even exacerbating conditions like POTS because of the hyperflexibility (stretchiness) of the cell walls which applies to blood-vessel walls, allowing for blood to pool (ew, again!) more easily & quickly in the body's extremities.

I always knew I was unusually loose-jointed & flexible, & knew it's difficult for me to really get a good stretch because of it ; but, because hyper-flexibility is considered a positive thing in the dance world, I've only in recent years understood the medical downsides to being this way ~ & there are lots.

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?? & more?

Hypothyroidism / Mast Cell Activation Syndrome / Chronic Migraine (*not 'Daily Persistent Headache'*) / Multiple Chemical Sensitivity / Asthma / IBS / Raynaud's / Atrial Fibrillation (suspected) / Small Fibre Neuropathy (suspected) / Ankylosing Spondylitis (suspected)..

???? If you read this far, THANK YOU! ????

I know this is a lot to process, particularly if you're new to the realm of invisible illness / hidden disability. So, if you read this far, thank you so much.

Though (amongst personal friends) I'm known to be one of the most optimistic & positive people on Earth (sometimes, to the point of people's confusion ??), it IS a lot ~ & it's a lot to live with.

(&, as I said, there are more conditions involved that I didn't even get to mention.)

Getting to share about it amongst professional peers means I can bring more of my whole self to my work & not feel I have to hide part of Me, which means I can 'get on with things' & get to focus less on hiding & more on doing the intersectional work I love.

| Xox, M |

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? DISCLAIMER : I am not a doctor of any kind (not a mainstream Western medicine doctor, nor a homeopath, kinesiologist, nor Integrative / Functional Medicine doctor). This article is a sharing of my experience through a *lived-experience* perspective of an avid researcher (e.g. peer-reviewed scientific papers, as well as everyday cause-&-effect in self & others), a lover of facts (& the ways they change over time as knowledge progresses!), & a person with decades of living with these conditions.

I can offer observations (personal & otherwise), feedback, tips, hints, & guidance (including international doctors with whom to connect, or scientific papers to read), though there is no substitute for finding the right doctors (of all types! & with these illnesses you'll need specialists & particularly doctors who understand that bodily systems *are* intrinsically inter-related ; yes, I do know specialists are expensive & the system is broken) & working with these doctors to find what really works for you. Often the 'what works' will be a patchwork that the doctors may understand, yet most other people may not 'get' it. It's (more than) ok if others don't understand. Each individual direct-experience with these things is the only truly accurate one.